Hi all,

I have been dx'd with hashimotos in addition to my TOS and sympathetic pain.

Was on synthroid for a while and then my thyroid normalized and I came off. Well it was invetitable that I would go back on and I did like a month ago. It was great the first couple weeks but know I have having some strange reactions to the meds or something.

About a 1/2 hour after I take the synthoid I get a diffused skin burning and prickly feeling.

Also since I started the meds, I now get my period wvery 2 weeks (which happened the last time I was on synthoid)

So the doc may change the meds I am on to another brand and wants to test my sex hormones.

Have to go see the gyn too incase something else is wrong which is freaking me out based on some internet reading.

I was doing a little more reading today on the thryoid stuff and wondering if perhaps I have an adrenal insufficiency that could be throwing things off with all the hormones as well as the thryoid meds.

One question I have is has anyone done a consult (phone or in person) with a Dr. Lowe. And has anyone seen Dr, Ridha Arem in Houston?

Thanks for any insight.

Hi, Shelley! I've taken Synthroid for years, noticed that the last time I refilled, they gave me the generic, which I've taken all this month, and was on Levothroid before the Synthroid. I've never had any side effects from any of it.
I don't understand why they told you to suspend the Synthroid, since my experience has been that once you are on a thyroid supplement, you stay on it. I found the following info: Hashimoto's Thyroiditis is treated with thyroid hormone replacement. A small pill taken once a day should be able to keep the thyroid hormone levels normal. This medicine will, in most cases, need to be taken for the rest of the patient's life. When trying to figure out the amount of hormone you need, you may have to return to your doctor several times for blood tests to guide adjustments in the medicine dose. It is important that the dose be right for you. A yearly visit to your doctor will help keep your levels normal and help you stay healthy overall.
The other info I found on side effects of Synthroid was that rash could be a sign of an allergic reaction. But one site I found pointed out that there are a LOT of things that can interact with it. Here's the link: http://www.pdrhealth.com/drug_info/r.../syn1421.shtml
and the list of interactives are found near the bottom of the page.
That's all I've got for you, hope someone else can post something more helpful.
Hugs,

I mean usually once you're hypo-t, you tend to stay that way, like always? If your TSH numbers got back in the normal range, that SHOULD mean that it's working....

http://www.rxabbott.com/pdf/Synthroid.pdf Read pages 6-7 and 10 in particular as other meds you take can accelerate/decellerate any dose's effects and what the normal and abnormal s/e's are.

As for Hashi's that can just be a progression of the Hypo-t, in my case it's auto-immune and sort of expected since I've CIDP[another auto-i issue]. Either the two are related or not, but, have you had any Anti-TPO or Anti-TG testing done to see what all else is going on? My TPO and TG #'s were high, but it seems my Hashi's storm is under control, probably due to my CIDP therapies. The thyroid is one contition that can be dealt with and usually treated easily and not-invasively...other than a few pints of blood now and then. I prefer that to other conditions!

I'm no doc, merely what seems to be a 'professional patient' these days...I see more docs? You know what I mean. But your reactions, aren't quite 'standard', I'd call your doc and if you don't get a 'come in and let's do some tests', get copies of your records at www.lizajane.org This site has a useful format for you to plug in your blood test ups and downs and you can tailor parts to your needs, easily, I think.

One thing about reading things on some sites...like here there's lots of good things, resources and support. BUT there are also folks who you have to take with a grain of salt... Don't start imagining what it all COULD be until the tests and all the experts look at the whole picture and assess what IS/ARE the issue[s]. I learned that with my whole BC experience last year. Don't even begin to worry about All the possiblities....get thru the testing and then deal with Just That Issue. Otherwise you could run yourself ragged with worry when you could conserve that energy for the more important things in life, such as family and keeping what-all health you have and will yet achieve.

Loisba is right, most docs I've had insist that the quality of the brand is superior to the generics...I see lots pro and con on the issue... Ask your doc[s] in the meantime and let us know how it's all working out! More 's -j

Thank you both so much for your posts.

I have an update.

To answer your question about why I went off. I have had a sllightly large goiter for a while. But harmless. Then all this stuff health wise came crashing down TOS mainly but looking back the thyroid definetley exacerbated somethings like muscle spasms.

Anyway they did dx me with hashis and I had many biopies all negative thank god. And after a course of steroids for a while surprisingly the thryoid normalized again in terms of TSH and all was well, except for the TOS damage from a neck injury. So the head endo at a major teaching hospital said its rare but it does happend where the thryoid normalizes so you are fine to go off the synthroid. So I did and I felt better...except for those muscle spasms.

Then a month or so ago I started to feel sluggish and very tired and like my neck was big again. sure enough TSH was showing hypo and antibodies still only slightly elevated.

So I staretd the syntroid again and for the first couple of weeks energy was back up, muscles feeling better and neuropathy or sympathetic pain response (thought from TOS) was down. Then some things started to happen like the last time on synthoid. Started getting period every 2 weeks. It sucks but it did happen the last time I was on synthroid. The university doc said it would normalize but it never did. So did gyn but it never did. And I can tell because I know my body that I am not ovulating. Ok fine livable certainly but frustrating.

Then I get my period this time and bam burning all over...prickly burning on my skin, face, hands soles of feet, stomach and pelvis. Burning that feels....I know this will sound weird but chemical like. And sure enough I notice that it happens within a 1/2 hour of taking the synthroid pill. And it gets prgressively less burning as my period wanes. So one day this week I dont take the synthroid and hmmm burning way down. So next day I take 1/2 dosage and burning back but less. And I felt like all my nerves in my body were dry and inflammed.

SInce I thought the burning was the RSd sympathetic pain I went to the pain doc for a shot and sure enough told him the sx and he said sure its symnpathetic in nature but it sure sounds hormone related.

I called the new endo doc who I like very much and told her and we agreed to change the med to see if its an allergic reaction. And I went in today to do blood test on all hormones, thryoid, sex hormones etc. So we will see what that says.

I also did some reading and have set up a phone consult with a doctor lowe who apparently is very well known thryoid expert. I also made appt with Dr Rihda Arem in Houston that wrote thryoid solution. Also made appt for a seond opinion with hormone doc here. That is on MOnday.

IN the meantime I have been doing some reading and something strikes a cord that if you take synthroid that you need to make sure that your do not have adrenal failure or insufficiency. Otherwise it makes the underage even more insufficient. And when this all started 1.5 years back I was extremely stressed, extreme. And right now I have a very stressful job.

I know that the adrenal, sex and thryoid hormones all need to be balanced to work properly.

Now I know I do not have adrenal failure but what if because of the job stress and health stress I have an insufficiency that is aggravated when I take the thryoid med. Plausible?

If that is the case I do not want to go back on prednisone again but I really do react very well when I do go on it, not the high doses but a lower one. And I do know that my b12 was low when this all started, not low like the docs would say is low but low by what all you have written here. It was 454. And I do feel better with the B50 complex and the sublingual B12. So I am going to have my b's tested again.

I have pulled down the Lizajane charts and will pot all my blood tests over the 1.5 years to see the trend.

So time will tell.

Thanks for your help and just for listening.

trying to deal with my own issues...I needed some 'recharge' time?

As for your issues, I will wait with others for any feedback from your next doc visit..
As for taking synthroid and other adrenal issues? IF your docs are doing regular [once a year to every 3-4 months ..depending on what other treatments you get] CBC's CMP's and any relevant thryoid panels as needed...well you should be in decent shape in that quarter..At least I HOPE! I don't think a single person on these boards EVER awaits blood test reports with JOY? Keep such things in perspective tho...other neuro conditions' test results are hints of things worse than ours, and after having been thru the cancer route...and come out OK, well there are things equally more nasty than many neuro conditions.
IF if were me, I would take a pass on the 'Houston phone consult' and see the endo doc tomorrow -to get a better handle on where you are now...and see what else can/should be done. Like any neuro diagnosis, the endo components take time, probably more time? That is my expectation of the whole process. And, process it seems to be, as I read it appears that things like 'rich meals', too much/too little exercise, asorbtion factors all play a role in all of IT and any test results. I have read some of that particular docs' works, but, am suspicious of any definitive 'consult' with little or no documentation of med records to back it all up...That is not meant to insult any particular doc...I have taken advantage of 'Second Opinons' without remorse in actually getting diagnosis in other auto-immune areas.
You KNOW what I mean!

Till late tomorrow tho, Shelley, I'm going to bite nails on your behalf...and I don't bite MY nails often?
I DO believe we were put on Earth to do this: a few times in our lives? Replace it with this: and you will be surprised how your stress lowers? Hugs for the meantime until later... - j

My sister, in Houston, is a patient of Dr. Ridha Arem. I was a patient of Dr. Richard Langer in Berkeley, he's also a good thyroid doctor (and author).

Do you have pernicious anemia? If your B-12 levels are low, that is a possibility. I have it, and the only B-12 that helps is Hydroxocobalamin injections. It's a synthetic, time-release B-12 that works wonders.

Thanks SW!

Ok here is the latest. I got a phone call from the endo saying that she has my blood tests back. Definite hormonal issues on top of the Hashi's.

I asked for the test to be faxed to me but the message she left say that some hormonal treatment is probabaly in order the tests show that I am hypogonadal (note I am blushing at this word )

So I looked it up and the firts couple of stories had more to do with men and men that had HIV or hepatitis . THinking anything like that would have shown up or do I need to ask to be tested for that. (ok slightly freaking out)

So anyone shed any more light on what that means or what kind of hormone treatment we talking here?

I'll write more when I have the tesr.

THanks

Ok internet searching and an article came up fromthe Geriatric Times...I'm only 43.

Hi, Shelley! Did you find this page? http://en.wikipedia.org/wiki/Hypogonadism
Most of what I found did seem to have to do with men, but I noticed this one mentioned women, also. I guess a little bit of bias must be showing up here. Heaven forbid that a MAN should have problems with his sex drive. But a woman? Oh, well, no big deal, apparently! Except to us women, of course! I did notice the page mentioned premature menopause. Maybe that's why you found the article in the Geriatric Times.
Hugs,

I just had to laugh when I saw the Geriatric Times.

Wowza. Doc faxed the blood tests to me today and geez if my sex are nonexistant.

Interesting. Talk to doc tomorrow.

Keep you posted.