# New diagnosis of Hashi's



## JanetWA (Dec 13, 2010)

Hi! After years of increasing hypothyroid symptoms, I was finally diagnosed with Hashi's, and started on levothyroxine. I had my first dose three days ago, and felt an immediate surge of energy, but since then I've been having a lot of side effects and ups and downs in my energy level. Is this normal? Do other people experience this initially, as well? Can I expect things to even out eventually?

Thanks for any input. My doctor is not exactly a font of information on this topic, which is frustrating, and leaves me feeling a bit alone.


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## CA-Lynn (Apr 29, 2010)

This is where you need to get your doctor to be informational.....if you expect to have a collaborative patient/doctor experience. Most doctors assume if you want the info you'll prod it out of them.

And you're sure it's Hashimoto's and not just hypothyroidism? Do you have test results?


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## northernlite (Oct 28, 2010)

Janet -

Like you I am newly diagnosed Hashi and started my levothyroxine 4 weeks ago. I am only on 50 mcg and we are going to move up slowly every 6 weeks. I felt nothing for the first 11 days and then I realize I had a good Sunday and I followed it with a good Monday and Tuesday. My exhausted crash at work used to happen around 1:00 in the afternoon and it moved to 3:00 and my "I really want to go to bed" time moved from 7 to 8. Then Wednesday I had a bad day, more joint pain, really tired. And then I followed that with a couple more good day.

So that is how it goes for me, better than I was a month ago. Bit more energy, less muscle and joint pain. Mostly better days with an occasional bad day. Not nearly where I want to be, exhausted myself today painting for 5 hours at my daughters and then coming home and snow blowing the 8" of snow!! I do find I push it a little too far now that I am feeling a bit better and I need to pace myself.

No real side effects for me, all changes are positive. I am just not as well as I want to be yet and I do have some bad days thrown in once or twice a week.

Some of the veterans will have to chime into the longer term and leveling out because I am not there yet!


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## JanetWA (Dec 13, 2010)

Thanks for your responses. I'm glad to hear you're feeling better after a month of treatment, northernlite. That is encouraging.

Lynn, I don't really know for certain that I have Hashi's rather than hypothyroidism. The doctor had his assistant call me, tell me the antibody test (TPOAb) was elevated (134) and I would be starting on medication, to pick it up at the pharmacy. I asked what the diagnosis was, and the assistant was unable to tell me. (Then, frustratingly, when I showed up at the pharmacy, the doctor hadn't actually sent the orders.) I think I may change doctors, because this kind of behavior is typical. Unfortunately, I belong to Group Health, and very few of the doctors in the plan are currently accepting new patients. I really do wish I had a doctor who would discuss things with me, but my options are limited. If anyone has any suggestions, I'd love to hear them.


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## northernlite (Oct 28, 2010)

What dosage did you start on? With you having side effects I wonder if they started you a little high. I am 50 so the correct way to start is low like I am to prevent cardiac issues but I know they can start younger people a little higher with less risk.


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## McKenna (Jun 23, 2010)

Hi Janet and welcome!
Did your doc do other antibody tests along with the TPO? Also helpful is to know your TSH, Free T3 and Free T4. Do you have them and can you post them?

I have Hashi's and it's certainly no picnic. You'll get a lot of information and support here.


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## Andros (Aug 26, 2009)

JanetWA said:


> Thanks for your responses. I'm glad to hear you're feeling better after a month of treatment, northernlite. That is encouraging.
> 
> Lynn, I don't really know for certain that I have Hashi's rather than hypothyroidism. The doctor had his assistant call me, tell me the antibody test (TPOAb) was elevated (134) and I would be starting on medication, to pick it up at the pharmacy. I asked what the diagnosis was, and the assistant was unable to tell me. (Then, frustratingly, when I showed up at the pharmacy, the doctor hadn't actually sent the orders.) I think I may change doctors, because this kind of behavior is typical. Unfortunately, I belong to Group Health, and very few of the doctors in the plan are currently accepting new patients. I really do wish I had a doctor who would discuss things with me, but my options are limited. If anyone has any suggestions, I'd love to hear them.


Welcome, JanetWA!!! Typically, the doctors suspect Hashimoto's when the TPO is like in the thousands. Or say even 8 or 900. However, this is only suggestive of Hashimoto's and further testing should be done.

Here is some info for you.................
http://www.thyroidmanager.org/Chapter8/8-frame.htm

In actuality, the presence of TPO (antimicrosomal antibodies) are "suggestive" of a myriad of autoimmune diseases such as RA, Lupus, Sjogren's, Scleroderma and the list goes on.

What is your thyroid panel (TSH, Free T3, Free T4) like? Do you have results and ranges you can share?

What is your starting dose of levoxyl? How long have you been taking it?


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## lainey (Aug 26, 2010)

JanetWA said:


> Thanks for your responses. I'm glad to hear you're feeling better after a month of treatment, northernlite. That is encouraging.
> 
> Lynn, I don't really know for certain that I have Hashi's rather than hypothyroidism. The doctor had his assistant call me, tell me the antibody test (TPOAb) was elevated (134) and I would be starting on medication, to pick it up at the pharmacy. I asked what the diagnosis was, and the assistant was unable to tell me. (Then, frustratingly, when I showed up at the pharmacy, the doctor hadn't actually sent the orders.) I think I may change doctors, because this kind of behavior is typical. Unfortunately, I belong to Group Health, and very few of the doctors in the plan are currently accepting new patients. I really do wish I had a doctor who would discuss things with me, but my options are limited. If anyone has any suggestions, I'd love to hear them.


A percentage of the population tests positive for antibodies, without having thyroid problems. You can also have a thyroid problem, and not have antibodies. In the Western world, however, a vast majority of thyroid problems are autoimmune in nature.

The presence of antibodies is helpful in making the diagnosis, but they do not really alter the treatment or prognosis of hypothyroidism.

High values of shifting antibodies can make maintenance of your levels difficult, however.

You should be asking for lab values, with ranges for TSH, FT4 and possibly FT3. It is helpful to keep a record of these, as your care will be ongoing.

A baseline sonogram of the thyroid is also recommended, to see if you have any structural changes in your thyroid.

Due to the long half life of the medication, it takes 6 to 8 weeks to build up in your system and for you to see a consistent affect. The titration process can be slow, and it can take several months to move your thyroid levels to a good point. You should be getting follow-up blood work every 6 to 8 weeks until your levels and medication dosage are stable.

The ups and downs are normal, and do not necessarily completely disappear, but you should reach a consistent level of more "good" than "bad".


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## CA-Lynn (Apr 29, 2010)

I have several autoimmune diseases, and as such, I see several specialists. I am also a member of several website forums that are specific to each of the diseases. One of the all-too-common complaints is that doctors don't take the time to explain what's going on and the plan of attack.

I think this happens because doctors are generally short on time and because they figure if you don't ask, that you're content to have the physician just dictate the lab orders and Rx's and all will be well.

One of the things you learn with autoimmune disorders is that the best chance of success in overcoming or at least holding the disease at bay is that you are enlightened and that you have a collaborative bond with your physician. To that end, it's up to the patient to do the research on the internet, make a list of outstanding questions to be asked at the next office visit, and then ASK the questions. I have even recommended that if the physician appears to be getting ready to bolt out the door that you block the doorway. No kidding, I've done it. It's up to the patient to make it clear that the questions need to be answered, and in such a way where the answers are fully understood.

All patients need to be fully proactive regarding their own healthcare.


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## lavender (Jul 13, 2010)

I just love the idea of holding my doctor hostage until she can really help me!


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## JanetWA (Dec 13, 2010)

Thanks for all your advice and support!

I happened to be seeing another doctor at my HMO yesterday, a sleep specialist, and he was much more informative and receptive to questions than my PCP -- what a breath of fresh air! If only they were all like that! Anyway, when he asked "Do you have any other questions I may be able to help you with?" I asked him if he could check my medical record and see what my thyroid diagnosis was. He was happy to comply, and he found that it was "Autoimmune hypothyroidism." So... he presumed that was Hashimoto's,. Are there are other types of autoimmune hypothyroidism?

I have to say, I feel fortunate to have been diagnosed and treated before I was sicker... my TSH has been going up steadily over the last several years (as has my weight, unfortunately), but it just crept out of the normal range a few months ago. (Group Health defines the upper limit of normal as 5.5.) My free T4 was tested twice, and it was 1.0 both times, which is in the normal range, apparently. However, I have had increasing hypothyroid symptoms for over 10 years, actually: miscarriages, lethargy, poor muscle tone and brittle hair and fingernails. In the last six months, I've had increasing constipation and I pretty much stopped sweating altogether. I've also had a lot of lingering colds and little viruses that have been very difficult to shake off. My father has hypothyroidism, as well; the doctor didn't ask about family history, but once I shared that family history he seemed to take my concerns a little more seriously.

Anyway, I definitely feel better, my fifth day on levothroid. My big problem now, I guess, is finding a doctor I trust and feel I can communicate with to follow me for this condition.


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## Andros (Aug 26, 2009)

JanetWA said:


> Thanks for all your advice and support!
> 
> I happened to be seeing another doctor at my HMO yesterday, a sleep specialist, and he was much more informative and receptive to questions than my PCP -- what a breath of fresh air! If only they were all like that! Anyway, when he asked "Do you have any other questions I may be able to help you with?" I asked him if he could check my medical record and see what my thyroid diagnosis was. He was happy to comply, and he found that it was "Autoimmune hypothyroidism." So... he presumed that was Hashimoto's,. Are there are other types of autoimmune hypothyroidism?
> 
> ...


Sooooooooooooo glad you are responding to the Levoxyl.

. Autoimmune hypothyroidism is the most common organ-specific autoimmune disorder. Two specific forms of autoimmune hypothyroidism exist: 1) chronic autoimmune thyroiditis, which is also known as Hashimoto's thyroiditis or Hashimoto's disease, and its variants, postpartum and sporadic thyroiditis, and 2) autoimmune atrophic thyroiditis, which is also known as primary myxedema. Myxedema is a term referring to the skin changes characterized by pitting and swelling etc..

http://www.suite101.com/blog/daisyelaine/autoimmune_hypothyroidism


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