Hypothyroidism/TSH/HELP

As I have posted before at 12 weeks post of 48 weeks my TSH has risen to 5.54. I called the doc back and was told not to worry as it was still in the normal range of 0.30-5.60 and that they wouldn't order another test for 30 days.

My current insurance runs out at the end of the month and I will have to start over on $1000 deductable. So my questions are this:

#1 How expensive is all this testing and meds?

#2 Since my TSH has continued to climb 12 weeks post to 5.54 what are the odds it will go back down like my other numbers did? Any knowlege or experience out there?

I don't think I have any of the symptoms I've read about but it's hard to tell as my system is still far from normal. I have gained 25 of the 30 pounds back and my bowls are not as free as they were on tx plus my hands and feet are cold which started on tx???????????

[cuteus]

I asked my GI about the tsh, and they don't monitor that count as part of the tx,,, they look at the t4 uptake, instead, how was yours?

[cuteus]

Scott is right, the t4 is usually listed right after the tsh reading.

[DH Bill]

THYROID TESTS

[DH Bill]

THYROID TESTS
Collected:     9/21/04
                 07:45              
TSH              5.54
Normals   (0.30-5.56)

Units   uIU/mL  

This all I have, never a word about t4 anywhere on my labs

[layla]

Weight gain constipation and sensativity to cold are all thyroid symptoms. You need to keep an eye on it and hope it goes down. I beleive someone listed a site with info on low ranges of TSH causing problems. Hopefully they will list it again for you. There were not allot of test for me for my thyroid. I thinks it's the TSH, T3 and T4 and antibody test. Often now it is just the T4 and TSH which my dic says he looks at together. It's different for everyone, I was very symptomatic even in the high 4 range. You should be able to call you lab and ask what they are charging and get an exact price. Try to get them the day before your insurance runs out if you can. A recent bill of mine shows $20 for the T4 test and $24 for thyroid stimulat. Just make sure when your doc orders you test it is only what is neccessary. I often find all kinds of other test on my labs and I am more specific now when I request test and look at the pw. LL

[DH Bill]

Next Tuesday will be 30 days so I will go back and get tested again and ask for a referral to ANOTHER specialist.

I don't think things are normal in this area.... Maybe because we live down wind from an active volcano ha ha.

I have been looking at some sites about hypothyroidism but my eys cross after a while with so much information.

I'm just wondering if I have a snowballs chance in hell of clearing this on my own or will it be just another thing where I have to just bite the bullet and move on.

How are you adjusting to everything? Hope all is well. You were mush help to me in the "48 weeks".

BTW what was "my dic says" in your post above : )

[DH Bill]

No one has said anything about t4 nor do I see it on my labs. I was told if I have a problem they will refer me to a thyroid specialist. I think they tested TSH every 3 months.

[layla]

I was wondering if you would catch the "what my dic says" haha it wasn't intentional just a typo. It would be funnier if I did not like my doc but he has been pretty good.
Here are two sites with info on mild hypothyroidism.

http://www.postgradmed.com/issues/2000/01_00/smallridge.htm

http://www.aafp.org/afp/980215ap/adlin.html

(I notice there in mention of being on interferon and of peripheral nueropathy in one article if anyone is interested).

I am going to go get my TSH tested today or tomorrow. I'll be curious where it is at since I do feel better. LL

[DoubleDose]

My endocrinologist was very familiar with interferon induced thyroid dysfunction, and understood the potential patterns that might present after tx.  He is somewhat conservative, and does not treat all mildly abnormal TSH patients.  If they are symptomatic, he tries synthroid therapy, with a goal of stabilizing at or near 1.0, with no promises of great changes in ones sx.  He says that some people seem to notice a major positive effect, some just a little bit, and others feel the same after synthroid treatment.  He thinks that it is very individual, PLUS they can't be sure how much of a patient's sx are actually from hypothyroid related effects, or are more interferon related....or other possible maladies.

My HCV doc was more inclined to just keep monitoring the TSH, even if it reached mildly elevated levels after tx.  He felt that a 6 or 7 on the TSH scale was close enough to normal to not cause any noticable symptoms.  He was also smart enough to recommend the specialist, to get an expert opinion on the need for treatment.  I am much more comfortable treating the problem, and getting to a more 'ideal' TSH.  

I am also finding that many of my post-tx, and pre-tx symptoms relating to skeletal and neck/head pain are probably due to structural abnormalities that I have probably had all my life.  Cervical ribs pinching nerves and arteries, bulging discs in cervical and thoracic regions, and a cyst on the spinal cord!!!!

For years I have ascribed ALL my symptoms to the HCV, and never did the 'due diligence' with other specialists to determine the REAL causes of the skeletal problems I have had for years.
I recently had a bunch of MRI's and X-Rays done to see what was going on.  Surprising to find it may not be either the prior HCV OR the interferon that caused much of my pain!!!  I am being looked at for Thoracic Outlet Syndrome, which causes lots of nerve and blood vessel impingement in the cervical/thoracic regions, radiating to head and arms.  Interesting.  You never know quite as much as you think you do.  And I would swear to my HCV doc that ALL my sx HAD to be HCV related.  He always politely disagreed.  Oh well!

Doubledose

[layla]

Did you find seeing an endo doc was more informative. Is he/she familiar with interferon induced hypothyroidism? I am wondering since I will most likely have this the rest of my life if I should find a endo doc or just use my internal med doc. His specialty is cronic (chronic) disease and he does seem quit informed but if it is a big advantage to see an endo I would seek one out. Just wondering if you have strong thoughts on this since you see and actual endo. I have been very strong on seeing a hepatologist if possible and wonder if this is comparable. LL

[woodbeegood]

dhbill - i too am having the darndest time figuring this whole thyroid thing out-i know i am a relatively intelligent person-but for some reason i am not grasping this subject....

doubledose thanks for your info--my TSH has risen over the past 2 months from 1.2 to 4.5 to 6.37-it seems like so many of the syptoms (symptoms) for hypothyroidism and sx from tx are so similar how do i tell the difference? also will they even treat this while still on tx? should i push my gastro for a referral to an endo dr?

[Laika]

Both of my sisters have thyroid problems (they do not have hep c).  They say make sure you have a good endocrinologist.  The tests are evidently tricky to read.  There is a lot of adjustment involved in getting your synthroid (sp?) dose where it needs to be.  This is just dealing with hypothyroid unrelated to hep C treatment, so that complicates the situation even more.  Try to find a good endocrinologist who has experience treating patients whose thyroid problems are induced by their HCV treatment. That's not difficult, right??

[woodbeegood]

well my nurse just called and they are going to refer me to an endo dr-so there must be something to this thyroid thing

[Ambush]

layla ~ "what my dic says"  LOL ~ I could actually get away with that typo and it would be true. :)  I saw an endo doc when my thryroid went bad.  He did an ultrasound so he could see that it was fried, but other than that, my PCP has managed my dosage and has me going for labs once a month until things settle in. It depends on your comfort level with your PCP and his dedication to managing your thyroid.

woodbeegood ~ Many of the symptoms of tx and thyroid problems are similar and it's hard to determine what's wrong when so many things are wrong.  My main clues were weight gain (when I wasn't eating enough to put weight on a bird) and severe constipation (which had never been an issue).  But there were many more.  And yes, they will treat thyroid while on tx.

ambush :)

[MajNeni]

Hey, Bill,
In my old country, they have a saying:  Cold hands, warm heart...
MN

[Califia]

I'm sorry I'm too brain-fogged to address all of dhbill's questions: classic state of hypothyroidism.   At 16 weeks, my TSH has shot up from 6 to 36.   Just when 4 shots of Procrit got my anemia taken care of, boom!   Down on the mat again.   I complained to my new endo when the TSH arrived at 6, and he pooh-poohed the symptoms I reported.  I think now he'll listen a little harder.  

Bill, most endos need to be arm-wrestled to prescribe thyroid hormone for someone whose TSH is anywhere within "normal" range.    And most of them, frankly, are wrong.   But it has everyting to do with how YOU are feeling.  Some people do okay on the high end of the TSH scale, or even a point or two outside of it; people like me become exhausted.   It depends on how you're metabolically wired.    BTW, I've monitored post-interferon Hashimoto's for 14 years and have always had both the TSH and Free T4 done.  That gives you a more complete picture of what's going on with the thyroid gland.

[Docsgold]

I too am having some abnormal thyroid values.  I have labs drawn monthly which does include a TSH.  It dropped from 2.7 to 0.15 (hyper).  My physician, of course, wasn't worried.  We drew another set of labs in 2 weeks which included T3, T4 & T7 (all normal) along with the TSH barely in the normal range(0.79).  At this point it seems to be trying to level out again.  I am due next week for my regular monthly labs and will see what the TSH is then.  Hopefully it levels out like the--dare I say it--rash and sinus problems have lately.

The problem understanding hypo and hyperthyroid is that it is a system that has "negative feedback loop", so you would think if TSH drops it would be hypo, but actually it is hyper.  And as I understand it, the thyroid can then go hyper before hypo.  Is that clear as mud?  

Very best of luck to you.

[DoubleDose]

My situation was identical.  My during-tx TSH values were around 6.5 to 7.5, which is elevated, and generally to be expected on tx.  After tx my TSH only fell to about 5.5, after more than six months off-therapy.  My HCV doc did not see any major problem, but did refer me to an endocrinologist for an expert opinion.  My endo promptly put me on synthroid therapy, with a goal of getting the TSH down to about 1.0, give or take a few tenths of a point.  He said that many people at the top of the range (4.0 to 5.3) have few symptoms, but there are also many who are very symptomatic....with fatigue, dry skin, muscle and skeletal aches, susceptible to cold, gritty eyes, etc. etc.

The Endocrinologist's Association changed their normal range for TSH a few years ago to: 0.5 to 3.2, but this new standard has not been adopted by many GP's and Labs.  In reality, the GREAT majority of the 'normal' population has TSH values under 2.0  and above 0.5.   This should also indicate to us just how 'normal' a 5.5 really is. (it isn't!!)

You may find many medical and research articles verifying this fact by doing an internet search for:  "Subclinical Hypothyroidism" ,  "Mildly elevated TSH values", Mild thyroid abnormalities,  Mild TSH elevations causing symptoms of hypothyroidism, and other variations on this theme.  

My fatigue has improved, my skin is MUCH better, my thinning hair on legs and arms is growing back like it was years ago, my coloring has improved, and I have had few headaches, all since being on synthroid therapy.

It has not solved ALL my post-tx problems, but many of the more irritating ones.  Most doctors are VERY uninformed about the impact of minor thyroid abnormalities, and if the TSH looks anywhere close to the old range, they think everything is just fine.  

Now, your TSH may continue to fall back to fully normal (1.0 to 2.0), or may continue to increase in value, or stay mildly elevated.  You need to monitor it to establish the trend.  If it stays put or increases in value you need to seek a specialist, and probably will receive synthroid therapy.

They should also do thyroid antibody tests, to determine the probability of long-term thyroid failure.  Do the internet research, and go armed to your doc, and get a referral to a good specialist.  By the way the TSH test is the 'gold standard' for determining if there are thyroid problems.  T-4, and T-3, free T-4 readings, etc., while helpful to completing the picture for the doc, are not as precise as the TSH.

Doubledose

[DH Bill]

Much thanks to all for your response to my concerns. After all day playing phone tag trying to explain and convince my docs office to get me in before the end of the month to a gland specialist they said the best they could do is a month out which is 2 weeks after my current insurance expires. You know the attitude, sit down and shut up your just a patient. I will do another TSH test next week.

As I sit here feeling sorry for myself I can't help but think of some of you that have had it so much harder than me, so with that thought in mind it gives me the courage to once again buck up and move forward. I did all I could do today and I'm tired so will be going to bed.

Thanks again everyone... your the best!

dh

[deve8r]

I'm about 18 months post tx. Still neg with type 2b! My thyroid levels were all wacky for the last few months and even stayed that way for a couple of months after tx. My liver specialist did nothing, telling me they would right themselves eventually and they did.