Hypothyroidism

[stan1]

i'll probably be getting a call this week from my NP about some thyroid tests just conducted, but am curious in the meantime about what to expect for treatment should it be recommended -- that way i'll have a little knowledge if they prescribe certain meds.

i get thyroid readings every 3 months -- and last week TSH showed at 188 ulU/m (high) and T4 at 1.0 ug/dL (low).  tests were repeated with roughly the same results -- from taking a quick peek at a hypo website, it appears that this means i've developed hypotyroidism and will probably be given a T4 supplement like synthroid or levoxyl or some generic equivalent.    has anyone else out there had to go on these types of drugs?   did they work?   did the doc favor one brand over another, or just give you generic?    did you have to play around with the dosages?   any side effects?   apparently there's one that affects T3 & T4.....perhaps cytomel (sp?).    anybody tried that particular one?   do my test readings sound way out of bounds?   sorry about the multitude of questions, but i'm likely to get a message this week simply prescribing an rx with very little accompanying info -- medical professionals always seem to be rushed.......thanks,

stan

[girlwithcurl]

high TSH means your thyroid isn't putting out enough hormone = hypothyroidism so your hypothalamus keeps putting out TSH to stimulate your thyroid, but it just can't respord to the signal.  It is common with tx, sorry to say I'm one of them, but synthroid is great and puts you back to normal in no time.  You can go the generic route and I recommend it, just newly approved, works just as well and a lot cheaper.  That's a good thing because you'll be on the thyroid supplement for the rest of your life.  T3 and T4 are just 2 diff. forms of thyroid hormone.  Hope you're feeling better, hypo can make you even more tired and with tx, it's a bear.

[cuteus]

btw, I bought the skin crack repair and applied it everywhere it seems to be prone to eventually crack. I saw the gel but this one had two coupons...;-}
the open crack healed and no new ones had a chance to open, I wonder if it will work on Honey's heels?
thanks again.

[danab2u]

I found Vaseline works best. Put it on at night and tie foot up in plastic grocery bag all night or till u have to leave home. Do periodically to stop cracking or crusting

[layla]

I agree with Doll Face. I was 123 lbs at 66 TSH and was started at 50 and within months I am now at 88. My doc told me the average dose is 112. LL

[doll face]

25 mcg does seem like a very low dose, I am 135lbs and started on 50mcgs, but your doctor will probably be testing you every week till he finds the right dose  for you.It might take a few tries but I am sure he will find it. Good Luck   Kim

[OkieJim]

I took went Hypo during TX. Have been on synthroid since detection. No SX to speek of. And will have to stay on the meds for the rest of my life. I did make SVR so I'm greatful for that. The meds are just an addition to my getting wiser mix anyway. Do get the meds and follow you Dr. instuctions.

Love Peace and Happiness

[layla]

Congrats on the work situation. Tx is rough enough without having to deal with extra stress from work. I am just glad this didn't happen to me while I was on tx. I didn't just lose the account I lost the whole line. I'm an independent rep so I represent a few companies. The largest one is going to a different type of rep arrangement, now that we have developed the territories. This is a very real risk in my field and is happening more often in my field now with the economy the way it is. I'm intetrviewing for a few companies but nothing great right now. I hope your new job works out well. LL

[doll face]

I only have a minute but wanted to touch in on this issue.
I too have interferon induced hypothyroidism. It came on about 8 months into tx. My chart shows normal levels are (0.50-5.20)
Mine were at 26.87 and I felt horrible so you must feel just unbearable right now. Doctor started me on 50mcg Synthroid. We have not had to adjust that dose and my counts have leveled out to an acceptable level. It took almost a week or two to feel better, and more than likely will have to stay on it the rest of my life, but it works. Good luck to you and I hope that you feel better soon.    Kim

[DH Bill]

Can you explain these numbers you are using for TSH (188) What scale is this? My scale is 0.30-5.60 which must be the old one? I just tested again for TSH an hour ago (it was 5.54 last month)They would not test for anything but TSH and referred me to a specialist for any thing more on the 12th of Nov.

[layla]

Autoimmune? Well yes. I think some of us are more prone to it, as I am. I'm glad you mentioned it because for me it's been a problem throughout tx and before. I've had other automimmune problems on tx and before but all related to HCV.
Dhbill,0.30 to 5.60 is often on the normal scale now for TSH. When it gets above 10 it seems many of us leave off the decimals so 188 is actualy 188.000 so you can see what we mean by WOW. For example when I was at 66, it was actually 66.686. Imagine, I was very sick at 4.6 so at 66.868 I was terrible and this person is at 188.000. Some people feel ok in the 4.0 to 5.6 range but others feel quit sickly. I hope I am clear on this. LL

[Califia]

Happy to hear you're out of pain at last.  And thanks for the correction: for some reason I only catch typos & mistakes after I've posted.  188!  Good lord!  You know,  I seem to be following in your footsteps, as I, too, developed that same chest wall inflammation.  I'm fairly certain it's tx-related, just another inflammatory response.   I'm glad it's disappeared as you recover from tx.   It seems that some of us are just a little more prone to autoimmune syndromes than others.

[stan1]

thanks for the replies -- my TSH did have decimals but they ended in .00 so i droped them.    the first one last week was 166.00 and the second one a few days later was 188.00 -- the forms don't show normal ranges but feature a "H" or "L" when you are abnormal (triggered on both of these).   back in july i was at 5.17 TSH and 8.1 for T4 and these were within normal limits cos there's no indicator beside them.   obviously a dramatic change has occurred, but i don't know how gradual it was since they only check every 12 weeks -- i suspect we'll be checking more frequently now.   i'm starting synthroid 25 mcg (not mg) per day tomorrow, which seems a bit wimpy given my numbers since it's the lowest possible dose and i weigh 190.   i feel like i should perhaps second-guess the NP on this and have her ask a doctor to confirm that this is a good starting point.

i don't feel much different at 188 than i did at 5 -- a lot of the listed symptoms of hypo-t overlap with the stated side effects of interferon/riba, so it's difficult to pinpoint exactly what's going on.

has anyone else my size and with a TSH this high started with 25 mcgs of synthroid (or its generic equivalent) -- i don't want to undertreat the thing and take forever to correct the imbalance.   thanks again,

stan

[DH Bill]

Thanks, I thought it was a different scale, Man! 188! now I see, bummer!

The only for sure thing I notice is that I'm cold but it is so hard to tell cause I'm still far from 100% from tx.

Any more on your lost account? I lost an account right before tx that was about a third of my income and that hurts!

I got some good news today. Last week my new company had asked me to manage my department in addition to sales and to think about what I wanted for a base salary plus commission over a certain dollar amount(I know you understand how this works) so I told them what I wanted and they accepted which will set me up pretty good until I get back to full commission. The last nine months have been a financial struggle so this is a real relief.

I continue to hope that all will turn out good for you. Thanks again

Bill

[layla]

Wow, your thyroid meds must be working to have a memory like that! Thanks for asking. After my dx I stopped exercising to let it heal and eventually it went away. Funny I had it all through tx and now I don't, (3 months post tx). Perhaps coincidence...who knows?  Oh I think stan said his TSH was 188 not 88...can you imagine! It's good of you to post on thyroid. Your info was helpful to me as I am sure it is to others. I really found it difficult to find personal experiences on thyroid on the internet, even more so with interferon induced problems. LL

[Califia]

Whatever happened with your costochondritis?   Are you feeling better?

[Califia]

Poor you: a TSH of 88?   You must feel like a veritable zombie.  You have my total sympathy.  I experienced a massive "thyroid storm" while on interferon monotherapy some years back...and yet there was apparently enough tissue left to be adversely affected this time around.  Last week  I sudenly went hypothyroid, felt nearly comatose w/ a TSH bouncing from 6 to 36 in just a week's time.   Luckily I yelped and the problem has been taken care of.   It has taken several days but the difference with a considerably increased thyroxine dosage (now at 175 mcg) is like day and night.  I feel like a human being again.   I suspect you'll respond very quickly to the medication.  

As for Cytomel, which I took for years, its use is controversial.  (Only one enthusiastic British/ Lithuanian study to support it. )   You only need it if your T4 to T3 conversion is inadequate.   In my opinion it's premature to consider it now.  The thing is to get on T4 supplementation (levothyroid or whatever), get the dosage up, and test every three or four weeks, not every three months.    If I had my druthers I'd be on Armour thyroid, but  unfortunately insurance doesn't cover it.    

I thought I felt more mentally alert and happier and perkier w/ Cytomel, but frankly the differences would be hard to feel right now.   As long as you're on interferon I think it'd be moot.   (What you do when taking both is decrease the total amount of T4 25% and make up for the rest with T3.)  When I started the combo drugs I decided just to take T4 to make life a little easier, since I knew I'd be on a dosage adjustment roller coaster.   The effect on the body is pretty intense, isn't it?  Amazing how important the thyroid is to just about everything.  And there is a symbiotic relationship between the thyroid and liver.    An increase in enzymes is not surprising--but it does not mean that tx is no longer working.  

Hope this helps, & if you have any more specific questions, I'll try to do my best to answer them.

[layla]

Yes I also have interferon induced hypothyroidism. I was put on levoxyl after testing 66. The way my doc does it is start you on a low level of meds, perhaps 50, then retest in 4 to 6 weeks and keeps increasing meds until you are in the normal range. Well, normal on many test included the 5 ranges and I was pretty sick in even the 4 range. This is different for everyone. I just got my TSH back this morning and I am now at 2.25 and I was hoping for under 2. I'm now on 88 of levoxyl. I do feel so much better now. I hate the thought of losing my thyroid but if I attain SVR that will take some of the pain of that away. There are very few here who after tx actually stopped meds but that doesn't seem to be the norm. There is no sx's from the meds and you will feel much better when they are working. I've met many people on them and they all say they feel just like normal with no sides from the meds. I am surprised you were not put on meds immediately with a TSH of 188. At 66 my docs office called right away and left a message for me to go directly to the pharmacy and pick up some meds, pronto. They do take 4 to 6 weeks to adjust in your body but I could notice a difference in the way I felt in about a week. I am sure you will read more since quit a few of us have had to deal with this. I am wondering how you are feeling at 188? I could barely function at 66. LL

[stan1]

i probably should have mentioned that i am halfway through a 48 week cycle with the combo and have geno 1.....i wonder if hypothyroidism can affect one's response to treatment.....just noticed that ALT & AST have risen sharply from the 30's to the 80's recently -- should i read anything into that?   thanks again,

stan

[stan1]

i thought i'd add that my T uptake is 24.1% and FTI is <1 ug/dL (low).....not sure how much relevance they have but they are somehow thyroid-related....

stan