CIDP and Thyroid
AnonymousOctober 8, 2008 at 1:30 pm
Hello all. This is Da-Rodg. I haven’t posted in a while due to illness. I had been very fatigued and was losing more muscle strength. I switched Nuerologists and went through a barrage of blood work. I found out I have Hypothyroidism, which makes you very weak and tired. As a result this condition also heightens the CIDP syndrome. Hence, I can’t be treated for the CIDP until I get my thyroid under control. My TSH was 18 and is now, ( after 6 mo ) 14. Unfortunatley the level needs to be TSH 4 before I can be treated with IVG or steroids. It also takes up to a year before the TSH level is at 4. Has anyone else experienced this?
AnonymousOctober 8, 2008 at 2:34 pm
Hi DaRoag! I just had my thyroid gland removed due to showing cancer and had a multinodular goiter where one nodule had the cancer inside that nodule. I also have Lupus and a B-12 problem and had spine surgery in May. I showed through a EMG/NCV that I had CIDP in June after having a major attack on my nervous system. My Endrocrine doctor seems to think that I may have been in a thyroid storm but possibly because of my already being on steroids that it stopped the storm from putting me into a life threatening situation but he’s still not sure if my CIDP is from the thyroid because I have Lupus and a past history of CNS lupus. I go into Duke on November 6th to be seen for this CIDP issue and have to rule out which is causing the CIDP! Thyroid, lupus or is it something else. Me! I am hoping for it being thyroid for I was told that can be reversed. No IVIG treatment done yet! I was hyper instead of hypo and they also said I have Graves Disease. After my surgery they said I will go into hypo now because I no longer have my thyroid. I have not seen my labs yet and have no idea what my levels are right now. But I wished I knew the results. I’m trying to learn how to read the TSH labs so I will know what I am dealing with. The doctors want me off the steroids too and are trying to wean me off of them but having lupus and inflammatory problems what can I do? See I had CNS lupus and that you have no choice but steroids. Pulse Steroids and then now back on pills form. Down to 6 1/2 mgs now but don’t know if I can go any lower. Have no idea what Duke is going to do as far as IVIG’s or not! Will find out in November! The Endrocrine I have here in my town told me that CIDP is very treatable and reversible if it’s caused by the thyroid gland and said I may not even have to have IVIG’s. But if it’s lupus then yes I will need IVIG’s if it’s CNS Lupus causing this. I’m not getting my hopes up just yet about that issue until the doctor at Duke decides my fate! Since they removed my thyroid out, I don’t seem to be doing to bad. Actually am feeling better! I have been given RAI treatments though to kill off thyroid cells within my body and 1 was given before surgery. Have had two initial treatments of that and they have me scheduled for 1 radiation treatment this coming Friday. After that I will be going to Duke and seeing the Endrocrine at the same time. So not sure what they plan after the radiation treatment. Each week is something new! They are watching me closely right now because of all my other health issues! I am being seen every week right now until they get me at Duke! Then what Duke does with me, I have no clue! LOL! They took my levels last week but I don’t know what they are reading just yet and will most likely find out Friday. Me being hyper and not knowing my levels or have my labs, I don’t know where I am in levels right now. But to be telling my hypo, I sure can’t tell too much! I was not getting any sleep before they removed it and now I am sleeping all night. My energy levels are getting better and I can see a minor difference in that. Not as nervous but still have some anxiety feeling but far much better than before. No popping out in sweats like I was before! Don’t get me wrong I am not 100 percent perfect but compared to 3 weeks ago before my surgery, I was 100 percent totally non functional. Today will make 15 days going into my third week and I feel like I have gained 20 percent of my life back! Sleeping all night now, not as nervous, not as hyper, energy level seems to be gaining, more awake in the daytime, no longer having the horrible tremors, and the carpul tunnel fire pan hands that were burning all the time has eased up some. Arms just feel weak but not burning like they were before. I am hoping my CIDP was caused by the thyroid and not CNS lupus. And with me doing this good right now maybe I will get lucky and not need further treatments except for keeping those levels in a good range. They did place me on a diet though. Carborhydrate diet because I have high cholesterol and hypoglycemia. And did not want me eating certain vegetables right now. Plan on asking about that one! I’m doing good right now compared to 3 weeks ago. Actually watching TV now and not falling asleep missing 10 parts of the movie. I would fall asleep from fatique and was watching a good movie and then wake up and missed 30 minutes of the movie. Fall back asleep and wake up again and was into another movie missing the movie I was watching! LOL! TV these past few weeks have been enjoyable now!
Wished I could answer your questions but am new to this thyroid thing myself and still learning online what I can! So confusing about the hypo and hyper and levels. I’m trying to understand the concept of it all but confused.
They said after my surgery I would now be hypo. But I am not really feeling much of hypo going on unless I just am so grateful they got this cancer in time and with surgery and pain and not feeling all well that I just don’t notice it. But I do notice it! Thats just so weird! I do notice improvements!
Wish you my best and hope you do well!
AnonymousOctober 8, 2008 at 2:44 pm
[QUOTE=darodg] My TSH was 18 and is now, ( after 6 mo ) 14. Unfortunatley the level needs to be TSH 4 before I can be treated with IVG or steroids. It also takes up to a year before the TSH level is at 4. Has anyone else experienced this?
I am curious as to why after 6 months your TSH came down only 4 points…and why you say it will take up to a year to get a level of 4 (I am assuming you are talking units of mIU/mL). Are you treating conventionally? Or unconventionally?
AnonymousOctober 8, 2008 at 3:03 pm
All this talk about Hypo and I sure hope I don’t get problems with that! Hope the symptoms will not return as I had with Hyper and Cancer! I will be asking this doctor a thousand questions now! 😀 With your TSH being a 4 wouldn’t that be putting you at close to hyper instead of hypo or do I have the labs opposite! Boy will I have a thousand questions to ask him after I get my voice back! 😀 Now you got me all scared! :confused: Okay Linda! Your doing fine right now! Try not to worry about it until the time comes! I must think positive here! LOL! I’m having trouble reading labs on this! I did look online some but was not concentrating and may have to reread how to configure the labs. Really not sure either! I want to pick my labs up so I can compare them online. Since I was hyper and my labs would show this then I will be able to tell the difference. But is 4 hypo or hyper? All confused!
AnonymousOctober 8, 2008 at 3:12 pm
I am assuming that you are seeing an endocrinologist and not someone else for this. Is your dosage getting upped every 6 weeks after testing…or is your Dr waiting longer between tests (some wait up to 8 weeks). I am just asking as a year is a long time to wait for treatment for your CIDP…and a long time to stabilize your TSH level. Of course your Dr knows you and your ailments and I do not.
Just as a FYI, a TSH of 4 mIU/L is considered to be hypothyroid as the AACE put out new ranges in 2002/2003 and the new upper end is 3.03 mIU/L. Not all Dr”s use the new ranges, some still follow the old ones.
AnonymousOctober 8, 2008 at 3:16 pm
[QUOTE=LindaH]But is 4 hypo or hyper? All confused![/QUOTE]
The normal range for TSH is 0.3-3.03 mIU/L…although not all Dr’s follow that range (some use 0.5-5, others 0.5-10).
With the range I have given, above 3 is considered to be Hypothyroid, and below 0.3 is considered to be Hyperthyroid. In actuality it isn’t as simple as that but showing you those numbers and range will help you see where hypo and hyper lie.
AnonymousOctober 8, 2008 at 3:23 pm
Maybe you can teach me something here! I just pulled out an old lab report that was done in 1999. Doctor back then never mentioned me having any thyroid problems on this lab. The only thing this lab reads is the TSH level.
Normal range back then was (0.35-5.50) My TSH back then read 0.39 showing no negatives or positives. The endrocrine doctor did some labs before surgery and I don’t have the results but I wrote them down before leaving the lab and asked the lab technician what they all were. At that time he did a TSH, T3, T4, Vitamin D25, TPO, TSI,CMP,HGB A/C, Glucose, Hyperglycemia, CBC, WBC. He said my TPO and TSI came out positive for Graves Disease. And said I was hyper! So is Hyper being more towards the low end and Hypo on the higher end! A 4 would be within normal limits just like my lab is 1999 0.42 was on the lower end but within normal range. Am I correct?
AnonymousOctober 8, 2008 at 3:33 pm
[QUOTE=LindaH]So is Hyper being more towards the low end and Hypo on the higher end! A 4 would be within normal limits just like my lab is 1999 0.42 was on the lower end but within normal range. Am I correct?[/QUOTE]
HyperT tends to be below the low normal range (ie below 0.35), and hypoT tends to be higher than the upper end of the range (above the upper end for your lab). A 4, for your lab, (not mine), would be considered normal as it falls in the normal range. A 6 on the other hand would be considered to be hypoT when looking at your clinics normal range.
AnonymousOctober 8, 2008 at 6:09 pm
Thanks Kristen! When I see this lab report from 1999 and see it on the lower end I begin to wonder if I might have been on the verge of trying to go into hyper. Found a lab also in 1998 a year before and that TSH read 2.05 so I may have been on a close borderline level then but was within normal limits. Hmmm! Very interesting. Now I will be able to see my results now. But will be looking at the Hypo end instead of Hyper. Thank-you!
AnonymousNovember 26, 2008 at 1:37 pm
Hi darodg, I have hypo also. I go up and down but have been pretty steady for a yr now. Why are you only on 75mcg? I’m on 100 now which is down from the 200 back 3 yrs ago. That really sounds like a low dose compared to mine. My numbers are only in the 6 to 7 range. I would question why the low dose. Symptoms can be the same when dealing with hypothyroid as compared to cidp. Fatigue, muscle weakness etc are very similar. Just curious, are you on any special diet? or exercise plan?
AnonymousNovember 26, 2008 at 2:49 pm
This is a bit funny for me, because I thought that I had CIDP before I got diagnosed with hypothyroidism. If you search posts by me, you will see that I have only started posts in/from CIDP.
Having Hashimoto’s with a very high count in the TPO test I am convinced that my symptomps mimicked CIDP as the symptoms seem so similar. Besides I have been very happy in this forum family 🙂
My TSH was only 5.0 (range 0.4-4.0) and TPO over 1300 (range 0-59). Apart from tiredness I had a multitude of neurological symptoms. Being well treated most of my neurological symptoms have disappeared and they only reappear when the dosage needs to be upped again. I am currently on 125 mcg eltroxin and 10 mcg liothyronin. I feel my best when my TSH is around 0.2 now. It is very different for every person where they feel their best – usually it is said to be around 1.0. So in conclusion I do not have CIDP or do I? I cannot vote in your poll anyway as I am not sure.
I can recommend a forum for thyroid patients [url]http://thyroidhost.proboards30.com/index.cgi[/url] if you do not already know it.
I hope that you get blood tests every 6-8 weeks, so your doctor can increase your meds accordingly. Be sure to have your vitamins checked as well – D vitamin, B12 cobalamin deficiency, iron and ferritin.
I wish you a good and fast recovery on meds.
AnonymousNovember 27, 2008 at 4:08 pm
There is no reason why hypothyroid cannot be controlled in half a year at the outside.
I am not giving advice here, just telling what I would do if faced with this situation. Nobody should do anything like this without consulting with his/her doctor. If I was at 18 uIU/ml and 75 mcg of thyroid took me down to 14, I would have my doctor change my prescription to 150 mcg and check the TSH level in 6 weeks. If the level was under 3 uIU/ml, then I would ask for another blood test in 6 weeks. If the TSH then was stable or slightly decreasing lower, I would do nothing except monitor the TSH level (3 months, then 6 months, then 1 year). If not, then I would up the dose, taking a guess depending on how much it had come down. It is possible to make these adjustments every 6 weeks, and it should not take more than 3 or 4 attempts to get the TSH below the upper number of the normal range.
Several things can interfere with how the body handles supplemental thyroid. One is timing. The body normal makes a big dose of thyroid in the hours before rising. It is therefore a good idea to take thyroid just after waking up. Taking it at other times throws off the body’s natural rhythm. Calcium supplements can interfere with thyroid’s absorption. My pharmacy has notices attached to the bottle saying not to take vitamin supplement for 4 hours after taking thyroid. Read the prescribing information that came with medicine; it has a wealth of information.
AnonymousNovember 27, 2008 at 5:05 pm
[QUOTE=MarkEns]There is no reason why hypothyroid cannot be controlled in half a year at the outside.
I am not giving advice here, I would have my doctor change my prescription to 150 mcg and check the TSH level in 6 weeks.
Calcium supplements can interfere with thyroid’s absorption. My pharmacy has notices attached to the bottle saying not to take vitamin supplement for 4 hours after taking thyroid.
Just some comments. Changing meds from 75 mcg to 150 mcg is a big jump which could affect the heart and give other symptoms. Raise meds by 25 mcg. Check with your doctor. Going slow and getting stable with bloodtests every 6-8 weeks would do it, also in less than a year.
Iron supplements can also interfere with the absorption of thyroid meds.
AnonymousSeptember 6, 2009 at 8:13 pm
It ‘depends’ on any given doctor’s philosophy and approach to thryroid issues.
I had had a very ‘dying’ thyroid for years prior to getting my own CIDP. Less than six months into the ‘CIDP’ at the time not yet diagnosed, my thyroid crashed. I made it into one of those emergency medical ‘pods’ as their last patient [and one that took the longest?] Turned out There was little TSH to detect at all in that one test! My toes were like Polish sausages and my feet & hands had swollen at least 3 times their normal size. Super swollen, hot and burning. UGLY!
Since I’d been diagnosed w/hypothyroid over a decade ago, I went up and down the dosage scale for about two years before finding a happy medium. That changed once during a decade when I’d developed the proverbial ‘goiter’. Got a biopsy and was told all OK but it wasn’t. It DOES really take about 6 weeks on any given dose to ‘see’ if numbers are getting into sync. Be patient. It can require lots of adjustments…up or down. My Thyroid med#’s have gone up from 50 to 150 and down over the last 15 years and if my docs aren’t watching it like I make SURE to question it all! IF they miss it? I am the one who suffers!
A trip to the radiology place five years ago saved me a LOT of later pain? In that they were going to destroy old x-ray and sonogram records of mine as ‘old’ I asked IF I could keep them? And, was told yes, I could, and it was one fortunate incident. Two 1/2 years ago, thyroid #’s started to vary oddly and I was referred to an endo. A new sono was ordered, BUT I had copies of the old tests and biopsy results. And the endo could COMPARE! [And, I didn’t have to have a new biopsy?-AH] In the basest of language? Years ago I had a pretty ‘yukky’ looking thyroid, NOW ONE VERY ‘yukky’ one! I had progressed from hypo to Hashimoto’s-essentially a dead thyroid. BTW? Over the dacade plus, I’ve been as low as ’50’ up to ‘150’ on the synthroid. I’m not that high now, and likely should have it increased? We shall see.
Take a look at thyroid and immune system interactions! I do believe there is a connection? But, the research done to date usually is about single medical issues – not about multiples, nor, interconnected ones, nor ones that cause other ones! That the thyroid crashed shortly after ‘getting’ CIDP? Maybe I was lucky or maybe things were happening all over my body! I have learned that one has to be educated and curious about any and ALL diagnosed problems, and then look for the connections if they are there. Most doctors and researchers do not KNOW how things from one body system affect/effect other systems. Learn all the ins and outs of it all, it can boggle the mind, but only YOU are your own best ‘detective!’ The internet is a wonderful tool IF you use it wisely -never say: Learned it on the ‘net’? Say instead: Saw a paper from the NIH about…..X & Y & Z…. What does it mean? Bet, you’ll get a ‘duh’ or change of subject. IF a doc poo-poohs the NIH? Well, I’d change them fast!
Doctors usually tend to be slow and cautious, as Ninus wrote-rightfully so, with this issue; unless the ‘some’ who diagnose us with the ‘ALL IN THE HEAD’ stuffs. ‘head docs’? Those I avoid at all costs. Second opinions are far cheaper to get…just say ‘you didn’t communicate well w/Dr X’, or want another opinion about it all. In the end, if nothing else, it’s a good way to interview docs?
I always ‘just wonder’ that IF, IF I’d been tested for all the right things by a doc who I won’t mention ever…. I would not be in this position! I am working at least for it not ever going to happen again to me or to others! Second opinions are cheap if you have the insurance and it could/might just save your life!
One thing else? Mark brought up the ‘calcium’ thing? Go web up your ‘thyroid prescribing information’! You [B]CANNOT![B][/B][/B] just take many meds together – thyroid meds are one of them!!!!! I cannot underscore this enough as you can cancel out what good each med does! Ergo? Taking one med, set a timer for the next, and for supplements the next? Usually an hour apart is good? But it makes taking meds become one ALL DAY chore at times.
Sigh? BTW? Synthroid and calcium are not compatable to take together, and that means your multi-vite w/the synthroid! It IS all in that prescribing FINE print.
PM Me for a heap of web sites I’ve got on thyroid [if they are still active?]a lot of them are good.
Keep faith and don’t give in!
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