Aa
6 mos post tx and hyperthyroid TSH <0.01
Has anyone experienced this post tx? I've been having problems with strength in my legs. Could this be the cause?
Hi hon, well don't take the condition lightly, it could be due to the chemo but there are 2 other common causes. 1 is the thyroid itself, tumors here are fairly common, 2 is the pituitary...tumors there are common as well (they used to not think so...but MRI archive prove now that about half of us get ademomas on the pit.
most are benign, but some cuae over or undersecretion of TSh,, and this can be dangerous...instead of just putting up with symptoms, you should try to discover the cause, and if you have a growing or secreting variety they can be gamma knifed out...it's a fairly simple procedure actually. google pituitary tomors and thyroid tumors and you will discover it makes sense to keep an eye on these. Often folks think thyroid stuff should just be medicated away...but the growing body of evidence suggests more screening would save lives. It's true most of these tumors are slow growing, benign, and often they will resolve on their own (mine did) meaning the body will recognize the tumor and disolve it (thank God for immune systems) but if you happen to be one this doesn't happen to...then look out. Unfortunately as usual I had to learn this stuff on my own...my doc mentioned none of it....and wouldn't MRI me becuase "it's too expensive"...I only found out because I kept insisting on finding the root cause and not just medicating away symptoms whilst a tumor might be brewing...
most are benign, but some cuae over or undersecretion of TSh,, and this can be dangerous...instead of just putting up with symptoms, you should try to discover the cause, and if you have a growing or secreting variety they can be gamma knifed out...it's a fairly simple procedure actually. google pituitary tomors and thyroid tumors and you will discover it makes sense to keep an eye on these. Often folks think thyroid stuff should just be medicated away...but the growing body of evidence suggests more screening would save lives. It's true most of these tumors are slow growing, benign, and often they will resolve on their own (mine did) meaning the body will recognize the tumor and disolve it (thank God for immune systems) but if you happen to be one this doesn't happen to...then look out. Unfortunately as usual I had to learn this stuff on my own...my doc mentioned none of it....and wouldn't MRI me becuase "it's too expensive"...I only found out because I kept insisting on finding the root cause and not just medicating away symptoms whilst a tumor might be brewing...
You're on the path to getting this seen to so that's good.
Personally I have not heard of this happening AFTER treatment but that doesn't mean it can't, I just personally haven't heard of it. Interferon triggers autoimmune diseases and I don't know how long it takes to manifest. And..perhaps...if your family has a history of this, it might not be related however I don't find it much of a stretch to consider that the INF triggered something sooner rather than later at the least.
Good luck with this.
Trish
Personally I have not heard of this happening AFTER treatment but that doesn't mean it can't, I just personally haven't heard of it. Interferon triggers autoimmune diseases and I don't know how long it takes to manifest. And..perhaps...if your family has a history of this, it might not be related however I don't find it much of a stretch to consider that the INF triggered something sooner rather than later at the least.
Good luck with this.
Trish
It was my bloodwork for my six month post tx that showed the 0.01. My Hep C PA noticed it and told me to contact my GP. I faxed the bloodwork to my GP and made an appt. for Tuesday. She is really good so I'm sure she will be proactive. This is strange to me because my thyroid was fine during tx. Is this usual 6 months after?
My was 0.01 three months ago, but because my T3 and T4 were still within normal range and I was 'asymptomatic' I was diagnosed as 'mildly hyperactive' and am monitored three-monthly (unless symptoms increase). My only sx has been some trouble sleeping, but my heart rate was okay and balanced etc normal. During tx your thyroid can got into 'hyper' then burn out into hypo, and once hypo, will need to be medicated. If you're hyper, there is a chance it will rectify itself, but needs to be reasonably closely monitored. Given your frightening symptoms, I'd be really hassling your GP to find out exactly what's causing it, and rectifying it quickly. Good luck.
Kathy, is it your GP who tested your TSH and found it at that level? Not doing anything for it whatsoever? The first thing my Hepatologist did when he noticed my hands shaking and whatnot BEFORE I even got my TSH taken and BEFORE I even got to an Endocrinologist, was put me on beta blockers immediately. It helped slow things down a bit until I could get seen. Hyperthyroid is exactly that and frankly whoever tested your TSH should have given you a referral to and Endocrinologist immediately in my opinion. That is a *LOW* TSH.
Another problem is that I'm in the process of landing a govt job and will have to relocate to San Francisco or Denver. I should know within the next week or so and then I'll have to move within the month. So I hope I can get this treatment under control before then. I can't take much more stress.
Thats great though because the thyroid might be a pain but you just have to take a pill every day and you should be fine - neuropathy now that is another whole ball of wax and you could end up having it forever.
I'll take the one pill every day I'm too old and tired to do much more than that!
(My new GP is pretty good too - the first GP told me I had no fibrosis and I was stage 3! Who needs to pay for that when it could kill you!)
I'll take the one pill every day I'm too old and tired to do much more than that!
(My new GP is pretty good too - the first GP told me I had no fibrosis and I was stage 3! Who needs to pay for that when it could kill you!)
My GP is pretty good so I'm sure I'll be in to see an endrocrenologist very soon. Thanks for your advice, I'm going to take it! I've learned my lesson, I don't go up or down without holding on to something. I had been thinking it was neuropathy, but my hep dr said it has been too long after tx for that to be the problem.
Kathy
You should call your GP and ask for a referral to the Endo - you need the specialist more than likely they are going to send you for a nuclear imaging scan (no biggie they make you take two radiation pills a day before and then you just lay on the table for an hour, like an xray) - with your TSH that low (mine was 0.0 and they freaked out so yours is the same) and a family history you dont want to waste any time.
GPs are great but when things aren't their specialty.....My GP said my thyroid was just FINE. My hep went berserk and called and got me right in to see the Endo but still I had to wait a few weeks for scan and then they finally gave me the meds (which was ok cause in that 2 1/2 weeks is when I flipped to hyper from hypo so it was sort of lucky).
Plus it sounds like you are absolutely miserable with the legs being that weak. The synthroid can help you but you need to have it to take and I think it takes a few weeks to 'really' kick in. You don't want to get hurt and end up having more problems - between treatment and this that is enough!!!!!!!! Be careful go slow and hold on to the bannisters everywhere!!!!!!!!!!!!
You should call your GP and ask for a referral to the Endo - you need the specialist more than likely they are going to send you for a nuclear imaging scan (no biggie they make you take two radiation pills a day before and then you just lay on the table for an hour, like an xray) - with your TSH that low (mine was 0.0 and they freaked out so yours is the same) and a family history you dont want to waste any time.
GPs are great but when things aren't their specialty.....My GP said my thyroid was just FINE. My hep went berserk and called and got me right in to see the Endo but still I had to wait a few weeks for scan and then they finally gave me the meds (which was ok cause in that 2 1/2 weeks is when I flipped to hyper from hypo so it was sort of lucky).
Plus it sounds like you are absolutely miserable with the legs being that weak. The synthroid can help you but you need to have it to take and I think it takes a few weeks to 'really' kick in. You don't want to get hurt and end up having more problems - between treatment and this that is enough!!!!!!!! Be careful go slow and hold on to the bannisters everywhere!!!!!!!!!!!!
My hands are shaky too. My real issue is the weakness in my legs. I can't get on the bus without pulling myself up the stairs with my arms. If I'm in a squatting or kneeling (one knee) I can't get up. There is no pain. I fell down two times last month. Once going up the stairs (4 stairs) and once going down. Really scarry. I've been getting my thyroid checked frequently for many years because of family history. I couldn't tell if my symptoms were part of tx or after. I was so fatigued during tx and when everything got so much better after tx was over I didn't pay too much attention to the growing weakness in my legs.
I'm seeing my GP next Tuesday. I found out about the TSH at my 6th month checkup after tx. Thyroid disease runs in my family. My grandmother on my father's side died from it. My mother had her thyroid removed over 35 yeas ago and then got Graves disease, something that is not supposed to happen.
Thanks for the great information and advice. I knew it was low, but I didn't know it was that low!
Thanks for the great information and advice. I knew it was low, but I didn't know it was that low!
Kathy, furthermore, the way I knew something was amiss was because my sense of balance was off. I couldn't take the escalators down at work anymore because I couldn't rely on my judgment to step on them properly anymore. My hands were shaky and things were just "off". Again, I hope you are seeing an Endocrinologist for this. Were you hypothyroid before or are thyroid issues a new development for you totally?
Kathy, that's a very low TSH. Are you under the care of an Endocrinologist? I recall being at that TSH and being hyperthyroid and not a place you want to be left out without being under proper care. Is someone monitoring and treating you for this?
My thyroid went kerfluie after tx and I am now on the replacement Levothyroxine. It takes a while to get the dose right so keep checking til you get it right. Good luck.
jd
jd
I went hyper to hypo during treatment and it never resolved. From what i understand hyper is more dangerous than hypo (because you could have a thyroid storm which could cause a stroke) so it's a good thing and a bad thing. I liked it because I could eat anything I wanted but the tiresome fact that it was dangerous made me follow up with the endo. By the time I got there I had switched to hypo. Both are treated with Syntrhoid and that keeps my numbers perfect. Sometimes with hyper they do radiate your thyroid and then remove it (I think that is faily common unfortunately).
The good news being you can live without a thyroid just perfectly fine as long as you continue to monitor the TSH and T4 and use the Syntrhoid as a replacement.
With Graves Disease you can have weakness and pain in all of your muscles not just your legs.
Hopefully it will go away and you won't have to deal with any of it.
The good news being you can live without a thyroid just perfectly fine as long as you continue to monitor the TSH and T4 and use the Syntrhoid as a replacement.
With Graves Disease you can have weakness and pain in all of your muscles not just your legs.
Hopefully it will go away and you won't have to deal with any of it.
Have an Answer?
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
