Graves' Disease Support Group
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...
Good Morning Everyone!
First off, thank you to all of you for your generosity of sharing information and encouragement. It means a lot as we deal with this crazy disease we have.
As I've posted previously, since about 2 weeks on the MMi, I have suffered with numbness and tingling in the hands and fingers, primarily at night which makes sleeping questionable at best. After the first 4 wks on MMI - 20 mg per day - split 10/10 my levels of FT4 dropped from 2.7 to 1.27 and FT3 from 7.8 to 4.3; meds reduced to 10 mg MMI per day - which I split 5/5 FT4 was at .74 with low range being .71 and FT3 was at
2.7 with high range being 4.2. My white blood count and liver panel were
normal at the end of the second 4 weeks - meds were then dropped to 5 mg per day with 2.75/2,75 split. Still the numbness continues and is worse at night and I'm guessing because I'm not moving...I can lay on my back and be fine and of couse I prefer to sleep on my stomach or side.
That being said after my 3rd sleepless night, called endo yesterday and
we discussed possibly changing to PTU to see if the numbness will
disappear but in the mean time she wanted me to drop to 2.75 per day and said to just take it once per day - Is that what you guys all recommend a 1.25 dose per day? Or she gave me the option of 5 mg every other day. I had taken a 2.5 dose yesterday morning so did not take
anything last night and the numbness was better earlier in the morning but had about and hour 3-4 AM that wasn't so great but was better after that. I was wondering if since night time is the problem maybe I should just take it only in the morning given the life span of the pill?
I have 4 week follow up labs next Fri 23rd and Dr and I agreed to see how the next week plays out before making any switches. She is concerned about the liver involvement with the PTU since I've already
shown sensitivity to the MMI.
I appreciate your opinions and help. I just need to get some sleep....:)))
Thanks so much.
First off, thank you to all of you for your generosity of sharing information and encouragement. It means a lot as we deal with this crazy disease we have.
As I've posted previously, since about 2 weeks on the MMi, I have suffered with numbness and tingling in the hands and fingers, primarily at night which makes sleeping questionable at best. After the first 4 wks on MMI - 20 mg per day - split 10/10 my levels of FT4 dropped from 2.7 to 1.27 and FT3 from 7.8 to 4.3; meds reduced to 10 mg MMI per day - which I split 5/5 FT4 was at .74 with low range being .71 and FT3 was at
2.7 with high range being 4.2. My white blood count and liver panel were
normal at the end of the second 4 weeks - meds were then dropped to 5 mg per day with 2.75/2,75 split. Still the numbness continues and is worse at night and I'm guessing because I'm not moving...I can lay on my back and be fine and of couse I prefer to sleep on my stomach or side.
That being said after my 3rd sleepless night, called endo yesterday and
we discussed possibly changing to PTU to see if the numbness will
disappear but in the mean time she wanted me to drop to 2.75 per day and said to just take it once per day - Is that what you guys all recommend a 1.25 dose per day? Or she gave me the option of 5 mg every other day. I had taken a 2.5 dose yesterday morning so did not take
anything last night and the numbness was better earlier in the morning but had about and hour 3-4 AM that wasn't so great but was better after that. I was wondering if since night time is the problem maybe I should just take it only in the morning given the life span of the pill?
I have 4 week follow up labs next Fri 23rd and Dr and I agreed to see how the next week plays out before making any switches. She is concerned about the liver involvement with the PTU since I've already
shown sensitivity to the MMI.
I appreciate your opinions and help. I just need to get some sleep....:)))
Thanks so much.
this next labs perhaps a drop to 1.25 once a day will be all that is needed to keep things where they should be.
I have no idea where I feel the best because I haven't stayed in any one place long enough to know...
Thanks again...
Cindee
{{{hugs}}}
split the 2.5 into 2 doses? I started the numbness after 2 weeks on the meds - could I have been hypo already? Not really getting any
relief yet but hope in the next few days this lower dose will do something. It seems to be any time I "grip" anything - like when I'm
cycling - goes super numb - as in dead and can't feel the brakes or
shifter which is not a good thing.
Thanks so much...
Cindee
Good luck and {{{hugs}}} :-)
I wondered about carpal but the meds also say the numbness/tingling can be a side affect - so how do you really know?
I started meds June 27th. TSH 4 weeks ago was at .051 so no
not anywheres close to normal yet. I started the 2.75 yesterday
so will see but imagine it will still take time for the levels to rise.
Very frustrating. I haven't slept for years anyway and then figured maybe the Graves was the culprit and now can't sleep 'cause everything goes numb.....ah on and on it goes....HA Oh well, it
could be a whole lot worse....
Thanks again.
after reading other posts, it makes me think it was going up because
my FT4's were so low.
Feeling pretty good today- did sleep - made myself sleep on my back and only had tingling - not numbness so that was good...;0)
I need to try and make this short..hahaha..
Side effect or hypo symptom..
The word side effect is deceptive here. If you look and the side effects of ATDs and side effects of replacement thyroid hormone, it is an almost perfect match. with only a very few specific to the actual ATD itself. What they are listing are effects of too much or too little medication = hypo or hyper.
While Carpal Tunnel Syndrome and Tarsal Tunnel Syndrome can be a separate diagnosis, they are also secondary to autoimmune thyroid disorders....a common problem caused by hypothyroid.
Since you mention sleeping being a time it causes problems, I suggest having your doctor provide you with a quality wrist brace, to be wore when sleeping. I found the over the counter ones to whimmpy, and useless. Keeping the wrist properly aligned prevents injury at night and makes a huge improvement during the day. It feels like somebody is holding your hand as you go to sleep though. ;)
As far as the PTU.. that's a huge can of worms. Graves' patients have been useing PTU since 1947. Tapazole was developed in 1950, due to problems with patient compliance using PTU ( three times per day). Tapazole ( brand name of MMI)is better in three doses per day, but can be used once a day. Better than nothing I guess.
In 2008, 340,000 individuals were prescribed methimazole and 101,000 individuals were prescribed PTU.
Liver problems have been in less than one patient per year.
Just some statistical tidbits: about 44,000 people died in car accidents in the United States last year. About 36,000 people die from influenza in the United States every year.
All liver problem patients have been on over 200 or 300 mg per day. Statistics not reveled as to if they took medication properly,
One fellow we know about too his initial high dose for one year, no labs, nothing. Only reappeared to be seen when his liver was trashed.
One little 8 year old boy had no response to PTU. Dose raised to 1.600 mg per day..no response. It's simply not possible to wallow that much PTU and have no response. Tales like this are why doctors often say parents can not be trusted to give their child ATDs. ( judged with to proof) He was given RAI and a few weeks later died. We watched daily to see more information.. .. all we got was his death was blamed on PTU. What ! The tiny group of us following this story while it was happening, were all shocked. That was the beginning for me, of not trusting just becasue their name is doctor. I still to this day feel so badly for that little boy.
Children are at greatest risk, as they are routinely given huge adult doses, and only once or twice a day. Their poor tiny bodies. Tapazole and the generic MMI is safer for them since it can be taken only once a day and not cause the larger problems. The black box warning was over due, but as expected, doctors now just heard that the black box is there, and never read more. Problem here is they are still overdosed and feel horrible, hives, rash, pain.. it is easy then for pro-RAI doctors to eliminate the next step of lowering the dose correctly, skipping the only other drug, and pushing RAI. They think this is easier for parents.. sadly kids will always go into remission and it is extremely rare for their Graves' to ever reoccur .
If PTU really was so dangerous, wouldn't we all be talking about our liver transplants , rather than our FT4 ?
Round and round we go.. same old thing. If they would diagnosis and dose closer to right, none of this would even come up.
There is a young, upcoming peds doc that has decided to make his fame being the one to revolutionize children's Graves' treatment ..RAI all the time. Seems to be his dream. So far he's done a great job of greatly increasing RAI in adults due to the black box warning. We only had two drugs. Effectively removing one makes us less trouble.
Well.. it wasn't short, but I did mange shorter that it could have been.
To those of you new to all this, the time of his death coincided perfectly with the time after RAI that a thyroid storm would happen if the ATD dose was incorrect and removed at the wrong time pre-RAI. This is a known risk of RAI, and most doctors do time the drug stopping and the RAI correctly. Thyroid storm is a know risk.
Why that doctor got away with blaming the PTU is a mystery. Not ever counting the fact that the parents obviously failed big time giving the child his medication. Plus.. what other "home remedy" must they have been giving that child for his levels to go so high ? I do remember seeing his T4 once and it was scarey high. Clearly not a RAI right now situation.
Thank you. I have been wondering since it was mentioned before if it isn't carpal tunnel that coincidenally is active now. After "googling" it
does seem to be as you stated an affect of autoimmune and being hypo. So since it started 2 weeks after beginning meds of 20 mg MMI - is it possible I was "hypo" or what my body thought was hypo?
The 4 week FT4 was at 1.24 which is in normal and just below the mid range of 1.3 - I think the range is .71-1.7 something or somewhere in there - don't have access to the numbers right now.
I do know the low is .71 and I was .74 at 8 weeks - so kept dropping even as the meds were cut in 1/2.
Have another 4 week blood draw on Fri. By the way - does anyone else have super hypo feelings when the meds are cut? Man, it knocks me for a loop for 4-5 days and then I feel ok again but ugly for a while.... Thanks again. I appreciate you all!