Hsshimodo's Help

[Pollymini]

HELP.  Hashi for 40 years +/-.  Controled with Synthroid and now Levoxyl. Over years 150mcg seems best dose for me.  Occassionally will show just slightly elevated TSH.  At 125 mcg I become ill ( takes months to get back to anything like normal).. Over 150 I will occassionally go Hyper and get palpitations.  Moved and new MD in 2006.  THS test  was slightly elevated.  He wanted to go down to 125 - told him NO!... I feel well at 150.  Reduced it to 137 and it now seems to have caught up with me.  For the last 6 months I have felt UGH!!!! Cold, dry skin, dry hair, brittle nails, small weight gain ( around middle) BUT unable to lose wieght with calorie control and increased physical activity etc. etc.  Otherwise healthy 73 year old female.  Saw MD for routine visit on Monday...the first time in 4 yearsI told him I do not feel well, an, because of symptoms thought it may be thyroid.  He showed no interest in  and indeed REFUSED to listen to my symptoms instead said he would reduce the 137mcg and add Rx for the T levels --- he does NOT have any current infor on the T3 or T4 levels. Last blood test at time of appointment was 6 months ago and then I believe only TSH. I persisted and he informed me that my levels were within normal range ( all based on TSH test that was 6 months old) and further said it did not matter what I said - my 'brain'( I assume he was referring to the OLD TSH test) was saying it was NORMAL. So why do I feel so 'unwell'?  Blood test were done on Monday and I asked to be given the specific numbers ... also numbers from the former tests done over the last few years but so far no luck.  I refused to change the RX and it is obvious that he is angry ...Now trying to find an Endro...did speak with another internist who informed me the only figure that he is interested in is the TSH level that 'tells all' ... needless to say I did not make an appoiuntment with him.  Will try calling another Endo tomorrow and will specifically ask if they consider blood work other that TSH when evaluating ... but I'm not hopefull.  Live in the Carolinas if anyone out there has an MD near Charlotte it would help.

Guess I'm just venting - but I'm sooo tired of feeling sick and tired!

[Pollymini]

Glad you're seeing a neurologist as many of your symptoms sound as if they may fall into that field.

I am not 'medical' but I don't believe that Hashi's can be caused by Lymes ... it is a separate and distinct auto immune disease....but then again they really don't understand just what the cause is.

Stick with your Neurologists - some diagnosis really take time and are arrived at by eliminating potential causes one by one.  Frustrating I know - but patience!!!

Hang in there

Polly

[Lori707]

I have been seeing a Neurologist for almost 2yrs. They did all sorts of tests on me. Recently I came out positive for small fiber neuropathy and automatic. I was also given a sweat test since I hadn't sweat in a couple years. I failed that also. Just recently I actually felt a tiny bit of sweat and I was SOOOO HAPPY! People take it for granted.  Since I was recently treated for Lymes, I just saw a neurologist that specializes in neuropathy stemming from Lymes disease. He repeated the EMG's and found neuropathy and damage to some nerves. My other neurologist wants to give me a lumbar puncture to test for inflammation and to see if I have Lymes in the brain. My new neurologist suggests the same so I'm allowing him to take care of it.

Now my rhuematologist wants to put me on the drug Plaquenil. Nasty med! Makes your hair fall out and destroys some of your vision which glasses could help. I don't want to go on it but I don't know what to do anymore!

I know that thyroid problems are common with Lymes but I'm wondering if it can cause Hashi which is an autoimmune disease.

[Pollymini]

Goodness - just looked at my last 'post' ...I certainly can't spell ...Oh well, maybe it's my thyroid ...ONLY KIDDING!

Thanks for the suggestion about the Cytomel - I suspect she my suggest it but I don't see her until late June.  I did call the office - it is a large practice with various specialists including several endos.... spoke first with someone in reception.  Of course she could not give me info but did say that she has often ordered both T3 and T4 ( Free) for the MDs. Nurse called me shortly afer and said the MD prescribed based on symptoms as well as tests and while she does use the TSH she also often has both T3 and T4 done.  Consider that to be encouraging...and I would add that both the the woman in reception/appointments and the RN went out their way to talk with me.  Oh yes the RN asked that I be certain to bring the results of the labs with me...

Enjopy the holiday - at least here ion the Carolinas it is sunny and hot...

[Pollymini]

Certainly anything is possible but, at least to me, seems unlikely that your symptoms are thyroid related.  Suggestion about B12 was a good one but there are other defficiencies that might be at play.  You might consider consulting someone who specializes in nutrition.   You might also consider being checked by a Neurologist.
As an long time Hashi's patient I remember a tendenacy at  first to blame every  ache and pain on my thyroid.  (Poor little thyroid - it doesn't work well - if at all -- but it is also usually innoscent.)

[Lori707]

I had been tested for Vit.B12 and it had come out fine. That was awhile ago.

[Barb135]

I was dx'd hypo about 2 yrs ago and Hashi's about 1.5 yrs --- I've been on stable dose for a while, so don't know if my thyroid is "dead" or not.

Polly -- I'm so glad you got that FT3 done and I agree with everyone else -- it's on the floor.  I basically  had to do the same thing in order to get my FT3 tested the first time, and it was low too.  I'm on 5 mcg cytomel (generic)/day.  I get up very early 3:30 am, take my levo, get ready for work, etc; then take my T3 med at/near 7:00 am.  This keeps me going through the day, and is pretty much worn off so I can sleep when I go to bed around 7:30 pm.  I tried splitting the dose, but with only 5 mcg/day, the 1/2 didn't do much.  

I surely hope the endo you have been referred to, will do better for you than your MD; and it was "big" of him to write you a note.  

Lori707  -- have you had your vitamin B12 levels tested?  Pernicious Anemia can cause the neuropathy  you describe.  I had it terribly until I got on B12 shots.  I have some permanent damage from being untreated for so many years, but it's so much better than it used to be.

[Lori707]

I have had parathesia(pins & needles) for 3yrs. Also muscle spasms all over along with muscle twitches all over. I'm on Gabapentin(Neurontin) because I have burning pain and sensations of hundreds of sparks. I also have a weird feeling of my skin. I feel like I'm clammy but my husband says I'm not. I expected to gain weight from the Gabapentin but I've gained over 50lbs and eating less. I don't get it!  I've gone from a size 2 to a 14. Yuk! Etc....

Could these symtoms I'm having come from my thyroid (Hashi's)?

Thanks so much!

[goolarra]

Polly's right...the total destruction of the thyroid can take months or decades.  I was diagnosed hypo 2.5 years ago and Hahsi's 1.5 years ago.  My endo and I are both thinking my thyroid is "dead" since I've been on a stable dose for well over a year now.  But, who knows, the foolish thing may just have plateaued for a while...time will tell.

[stella5349]

You're a great asset to have here too Polly.

[Pollymini]

I'm certainly no expert but once you have it - you have it...on a more cheerful l note you will die with it NOT of it.  I believe the destructing of the thyroid proceeds but at a different rate for each person.  Evidently mine still works at least somewhat as the meds have to be adjusted - but each of us is different.  Only way to manage is to find an MD you trust and can work with and of course LEARN about the diagnosis.  Only you know how you  feel.

Polly

PS This site is an excellent place to get information and insite

[Lori707]

I was just diagnosed with Hashi's and hypo. You first stated you have had this for 40 years?? I was just going to ask my endo doc how long a person has Hashi's before your entire thyroid is destroyed.

[stella5349]

Educate him Polly - you will be doing good for other thyroid patients seeing him in the future. Also with your lab send him a Free T3 outline for proper care and treatment.

Here send this or print this link

http://www.thyroid-info.com/articles/freet3woliner.htm

[Pollymini]

Amazing what one can now do on the 'net'.  Thanks to your suggestions I went 'on line'
Sunday night to Healthcheckusa.  Filled in their form- ordered the free T3 test and parted with some $.  Immediate acknowledgement followed shortly by E Mail from LabCorp to make arrangements for blood draw.  Had the blood draw on Monday afternoon. Received the results Wednesday - late afternoon/early evening online and received hard copy in today's Thursday's) mail.  Good service to say the least.

In today's mail also received a handwritten note from my pcp ... 'explaining' why he had referred me to an endo ( his reasoning etc.) and hoping that the endo would help me to 'feel better' ... actually a very nice note.  I shall send him an equally pleasant though brief response including a copy of the hard copy of the free T3 results ... he's young so hopefully not to old to learn.

No doubt I shall live to ***** again...

Still not a fan of the medical community...

Thanks again to all...

[goolarra]

Yes, I agree, that turnaround on the FT3 is impressive.  That's better than many people do going through their local labs.  Was that a net site, or were you able to do this locally without an order?

[stella5349]

You got the lab test done and read in 2 days on your own? - How did you mange that Polly?

[stella5349]

Your not going hyper at all. Low Ft3 can mock "hyper" symptoms and you have proof this is your reason for your symptoms.

[stella5349]

Excellent conclusion Goolarra. On the floor is exactly this situation.

Polly - this physician is a bad thyroid doctor and in most cases - the referral he will give you will be someone in HIS/HER system of ignorance. They work on "levels" together and just b/c this doctor has an endo license.. most likely will mean nothing for you.

You need ratioing out thyroid meds adding in Cytomel with Synthroid. I think argument started with this doctor with you demanding to stay on .150mcg T4 meds... too.

Here's what you "can" try to approach this doctor with.... Agree on lowering the meds... Maybe even to .112mcg Synthroid - BUT must add in T3 Cytomel at .05 mcg twice daily. Come clean with the FT3 test you ahd done and show him the results comparabally to the latest FT4 lab you had done with him. Ask him to ignore the TSH for right now ( really forever but to appease him to suggest that right now) Suggest to retest on 4 weeks - again ignoring the TSH but establishing a MUST test for the FT3 and FT4 ONLY.

If you can't budge this doctor then you should find an Intregrative medicine doctor willing to raise the T3 hormone in you to get well again. Don't bother with the endo you are referred to. Go find another on your own.

[goolarra]

I think your FT3 test tells it all...it's on the floor.  In addition to asking which tests they order, also make sure they are willing to prescribe Cytomel...some are not willing to do this.  Obviously, your doctor is not comfortable treating you because you are not a textbook case.  When you add the Cytomel, you will also have to reduce your T4 meds.  Cytomel is roughly four times more powerful than T4, so you want to reduce T4 by about 20-25 mcg for every 5 mcg Cytomel you add.  Your T4 is already on the high side, so I'd go at least 25 mcg T4 less.  Also, T3 (Cytomel) is very fast-acting, so many people find it beneficial to split the dose...half in the morning with the T4 and the other half in the afternoon.  You'll have to experiment with what the best time is for you...early enough to give you a boost, but not late enough to disturb your sleep.  Good luck with the referral.

[Pollymini]

Received note from my MD's office and I quote "TSH is too low (possibly indicating too much thyroid replacement) - with your symptoms I've made a referral to endocrinology'.

How he knows my symptoms I'll never know - he never let me tell him what they were!
Of course h'se the same one who said ( before the new tests) that my thyroid was fine...yeah. right!

His tests:  T4 (free) 1.31  range.06 -1.6
                TSH  0.070                  

Based on results of test done one year ago he wanted to reduce dose of Levoxyl and I believe possibly add Cytomel (or what ever that drug is).  I refused without a new blood test which produced the above result and now I've been 'referred.

Had a T3 (free) done (on my own) and just received the results tonight

                       Free T3  2.03         (range 2.0 -4.4)

Intend to try to 'interview the MD to whom I was referred or her staff to see just what tests they order when prescribing or changing thyroid meds.

I guess the current results explain my symptoms which certainly have not been severe - more long the lines of annoying.  

I am beginning to wonder if the medical community understands the distinction between beeing sick and feeling 'unwell'.

Thanks for any feed back

[Pollymini]

Thanks 'guys'

Just ordered a T3 (Free) test and will have it done this afternoon.  Hopefully it will shed some light.  (Post results when I get them).

Will also start systematic search for new MD.

This has been and education - thanks to you who have answered and also thanks for the running 'blog - ' as said, and education.

Polly

PS Agree about keeping calm at MD's office however there are times when it is not advisable.  Situation NOT in any way related to Thyroid an MD insisted I must have immediate major surgery ... even through I 'calmly' pointed out that the type surgery  had not worked for me previously.  He became very angry at my refusal and ended up screaming ... I CALMLY left the office but when his nurse came running after me loudly demanding I set  an appointment for immediate surgery I 'lost it'.  After much research went to different surgeon - different procedure ( he agreed with me that the other would not have worked for me) and I'm fine!  Sometimes one does have to disagree with them and sometimes loudly disagree with them.

[stella5349]

yes and thyroid disorders can bring esclated neuro - emotions too. Its a very tough disease.

Here you can vent all you want... at the doctors office - Key-educated- calm "approach" to get them to listen is so important.

[LazyMoose]

Remember............Free T3, not just T3

[Pollymini]

Thanks for the info

I will get at least the T3 and may even consider redoing the other labs

[LazyMoose]

Online lab orders that work with local labs for retail customers.:

www.labcorp.com

and healthcheckusa