I'm totally frustrated. I've suffered lower body stiffness and pain for most of the past year. In my effort to get to the bottom of it, I discovered I have Hashimotos. Well, at least I think I do. Initially, I had a low TSH but then when it was retested several months later it was normal. An endocrinologist (who is on Mary Shomon's list of best thyroid docs) ordered thyroid antibody tests (thyroglobulin AB) which was highly elevated. All other labs, including Thyroid Peroxidase antibodies, TSH, T3, T4 were all within normal range.

Well, the endo told me I have Hashimotos, based on the antibodies, however she denied my pain was thyroid related as the labs were otherwise normal. The fact sheet she handed me said sore muscles are a symptom of Hashimotos but when asked she persisted in her belief that the pain was not thyroid.

I recently read some books on thyroid linking the antibodies to fibromyalgia. Also, in a book called Thyroid Power, by Dr. Richard Shames, he talks of a woman who had unexplained pain, and also had normal labs but for high antibodies. He says she was helped by thyroid meds.

I looked at Dr. Shames' website and he is quite the self-promoter. He offers a "coaching session" for $270 in which he tells you what to ask your own doctor (he can't prescribe if you don't see him). He will tell you what doctors in your area might subscribe to his beliefs, but you must fork over the $270 for the "coaching".

One of the links on his site is Mary Shomons best thyroid docs. I have already seen a doctor on this site with the above results.

My question is - how in the world do we know who to believe? It seems that the doctors that will give you low doses of thyroid meds when your labs are normal (my TSH was 1.02- far from the upper range of 4.5) are those doctors that write books- self promote etc. Am I wrong? Has anyone here been treated with thyroid meds who only had high antibodies, but normal labs? Have you been treated by a trusted doctor or family physician, not someone who promotes themselves on the internet?

Sorry for the wordiness - I have just been going in circles for a long time. I have now developed very itchy skin with rashes which I chalked up to winter. I have ALWAYS had cold hands etc with Raynauds' syndrome. Everything is telling me I have some type of thyroid problem, yet have not been offered treatment despite the Hashimotos diagnosis. Seems the belief is that Hashimotos may lead to hypothyroidism but until that shows up in the blood work it is not to be treated.

I already dropped one endo and went to this so-called good thyroid doctor from Mary Shomons site. I don't want to ask any doctor for thyroid meds if they do not believe they can help. I know that many say "treat the symptoms not the labs". I know there are those who believe that subclinical hypothyroidism should be treated. But does one ask for thyroid meds when your TSH is well within normal range? Who do you ask if an endo who is a supposed great thyroid doctor doesn't
recommend it?

I don't want to make a bad situation worse. This endo is not even on my plan and I don't want to keep paying money
for nothing. Any advice?

So sorry to hear you are in Hashi Hell. I have frequent flyer miles there myself and DO consider myself an expert on the ups and downs and "what your doctor doesn't tell you" bits. I've had Hashi since I was in my early twenties and at the time was fortunate to have met a doctor who had just completed his dissertation on Hashimoto. I wish I had known what a gold mine he was, but I was too young and naive to know that not all "doctors" would be as well informed. I can't even recall his name. What I DO remember is how he explained to me about not only the body pieces but the mind (panic/anxiety etc.) swings that could come along with auto-immune thyroid disease. He said historically they put women in mental institutions who where in their 40's and having undiagnosed thyroid flares.

What he did on a practical level for me was start me on thyroid replacement right away. I couldn't understand why, because my lab tests were normal and other than a few "tachy" spells I felt OK. He explained that the rationale was that by taking the thyroid synthetically ... my own body would stop producing the anti-bodies that were attacking my thyroid tissue.


Bad news is, later when he moved away my first endo took me off the replacement and said there was no need to be taking the pills. For the last 25 years, I've been to several endos, and general practioners until I finally found a doctor who would treat my hashi based on how I FELT instead of what the lab reported. He's not an endo, but once you have the diagnosis with hashi ... what more do you really need an endo for? Anyone can request the blood work...and I have mine checked every 3 months. (Every 6 months if I am going through a stable period.)

I wish I could say it's been all smooth sailing ... but even though I'm vigiliant with testing and adjusting my meds, my Doc and I have had the dickens of a time keeping everything on an even playing field. My last hashi anti-body test was 680 (normal is >30). So needless to say I've been going through intermittent flares which for me contributed to loosing my job last fall. I do tend to get a lot of back pain this go around, and as you know from Shomon's books she believes that once you have one auto-immune disorder it's easy to pick up others. It's been a bumpy ride. But hey, I'm in my 40's and not in a mental institution -- so by one claim I'm ahead of the game!

Bottom line, I believe our bodies have an innate wisdom and with or without finding the "right" answers they will eventually work their way back to health. Good luck on your healing journey.

~EM

EM-

Thanks for the reply but I'm confused- have you been off the thyroid meds for 25 years? While its true you don't need an endo to treat, I can't imagine any of the general practitioners I've been to giving me any thyroid meds if my TSH, T3 and T4 are well within normal range. If I press the matter by showing them all the literature on antibodies they will tell me to see an expert (endo) and then, well you know.....

From what I can see, antibodies in and of themselves are not considered treatable. The endos only treat when the labs are out of range. So, while I am told that my Thyroglobulin AB level of 1002 (normal is less than 20) indicates an autoimmune thyroid process (Hashimotos) until such time as my other labs are off, there is no reason to be treated.

When you say you found a doctor who will treat how you feel, does that mean that you were given thyroid meds when your TSH, T3, T4 were in normal range? What type of doctor did you find? Seems only a small group of naturopath types will buy into treating high antibodies, am I wrong?

I'd like to believe things will even out, but its my understanding that once one has thyroid antibodies they are permanent.
This is no big deal if symptoms do not flow from them, but a real big deal if they do and no one will treat it.

Seems to me either high thyroid antibodies cause symptoms or they don't. I can't understand why I keep reading so many conflicting things about this.

Thanks again.

I've been on thyroid meds for at least 15 years -- various doses. And YES my regular HMO doctor does let me change my dose based on how I'm feeling even when my numbers are in range -- I like to keep my TSH around a 1 or 1.5, when it creeps up to a 3 my own thyroid is producing and that will make the anti-bodies sore again. You are absolutely right it's hard to find a doctor who will work with you. I've been through more than my share. What I love about my physician (who I've seen now for over 6 years) is that he will let me bring in anything off the web and we will sit down and talk about it like two intelligent adults and then as a team we make decisions about what to try. I know he's one in a million ... but keep looking, the end result is worth the effort.

My antibodies actually go away completely at times, usually when my synthetic dose is on the money and my own thyroid is not producing anything for my body to attack. These are the "bliss years" when everything is in balance.

Most endos (and insurance companies!) look at Hashi as some self-limiting illness that will quietly take care of itself ... by slowly killing off your own thyroid gland until you become HYPO-thyroid at which time you will be put on synthetic replacement for the rest of your life. And you know for some people, maybe it works that way. The high anti-bodies don't cause any symptoms and they can just wait until the scar tissue builds up and the lab tests go HYPO and then it's easy to supplement with a little synthroid. But for me the anti-bodies cause lots of intermittent flares -- sometimes I'm HYPOthyroid, sometimes I'm HYPERthyroid. Big swings, without warning.

For all the trouble I have with my thyroid ... I can't figure out why they won't just nuke it (nuclear meds to kill the thyroid altogether in a one time pill, like the do for GRAVES) but the Doctor's just don't see Hashi as an issue.

When I went out on disability from work this past fall ... I learned that the insurance company only give 3 months of medical leave for Hashimoto. Unbelievable. As for me though, I do have other health issues -- probably all auto-immune related but ya've gotta wonder which came first the chicken or the egg?

EM-
Thanks for the reply. My last TSH was 1.2 and before that it was much lower. Not sure I could even find an HMO doctor to take me on.

Its interesting that you say your antibodies will disappear- that is contrary to what I read. Does your HMO doctor take a measurement for antibodies every few months?

I just read an article posted by Evening Primrose on this site. The article was about a physician in the UK who was up on charges because he prescribed thyroid for patients with "normal" labs. Perhaps that is what this is all about - ignorant and or fearful doctors who either don't know much about thyroid or are afraid to buck the system. The same ones who are afraid to give you a percocet lest the DEA swoop down on them.

It really pathetic that our measuring stick for good health is staying out of a mental hospital. Maybe its asking too much to actually feel good again!

lidge, one thing to consider as well, is if you have any "thyroid stimulating immuglobulin antibodies" which is an indication of graves disease.............i am realizing that this was a problem for me getting diagnosed since i had these antibodies, and this can supress the tsh level........it would not hurt for you to find a doctor who would be willing to give you a trial of thyroid meds...........if you continue to go to mary shamons site, you will see how hashimoto can cause great havoc in one's health........remember that the thyroid affects every cell in the body..........hugs

thyroid disease is so tricky.....my case was I had Graves disease with antibodies...that is I was hyperthyroid. I had treatment but though my TSH was 1.02 and around that and my FT3 and FT4 was ok, I still had the antibodies for the disease for quite sometime and it is my feeling that it was the ANTIBODIES, that continued to cause minor fluctuations that caused the symptoms.

Keep in mind that any blood test is just a snap-shot in time and will not reflect blood fluctuations each day, or hours and night and so forth.....I took some thryoid meds, synthroid and even tried Armour, but because my TSH was really normal, normal and normal....all the thyriod meds did was further supress my thryoid function and make me feel much, much worse....I tried using thryoid druges different kinds and different amounts for about a year until I finally realized it was doing me no good...and I even got WORSE.

Testing of my antibodies in the last year show that my Disease is indeed in remission....more than that, actually, I　no longer have the antibodies for Graves Disease....nor do I have any problems with my FT3, FT4 or TSH....all really normal....YET, I still have symptoms...which now I guess I just have to attribute to peri....all ovarian blood tests are normal too! Yet, I am 48 and there seems to be no other logical explanation at this point.

So what do I do? I try to eat all I like in moderation, walk when I can, take vitamins when I remember, drink a lot of water and juice and stuff, try to do things I like and I WAIT.....I don't know what else to do...but hope my case will help you think about your's...did I help?

you have made some wonderful points bear, however, i know when you tried meds they made you feel worse........this is NOT uncommon at all...........most people feel WAY worse before they feel better when taking thyroid replacement......some people take up to a year or more to feel "normal" again.....but this would be taking the same meds consistintly for that time............it wrecks havoc on the body if we switch these meds around every few months..........i know because it happened to me too............i have learned alot from mary shomans site, and if not for reading everyday and people helping me, i would have given up on the meds too because of how bad i was feeling..........i too had the same problem, but it takes going very slow and increasing dosages every 8 weeks, until the free levels are in a good range........my graves antibodies go up and down a lot too, but its the TPO antibodies (for hashimoto) that continue to stay elevated.......this continues to cause damage to my thyroid, which makes taking meds inevitable..............if your hashi antibodies are down, then that is so WONDERFUL!!!.....i am always working on trying to get mine down too.......its so hard when you have both sets of antibodies...since the graves can cause your tsh and labs to look normal, but yet you are still hypo from the hashi antibodies......imho, i think the best thing is for a patient to try meds and def. supress ones own function (if they are suffering with symptoms) .....if one is feeling ok, then they can do all the things you are doing to stay healthy.......i also know with this last med increase, my ovary is making more progestrone on its own than in the last 3 years......getting my thyroid regulated is helping my ovarian function as with everyone else........thyroid effects every cell in the body.........i would not wish this disease on anyone, however, atleast it is treatable.......hugs to you and i hope you will continue to feel better.......

HI sacoya: , I don't want to steal the thread from Lidge, but I will get tested next time for Hashimotos as well...when I asked about it before, they said that for me with Graves (those are the antibodies that have gone) it would be very unlikely for me to get Hashimotos as well...but since you are a case in point, I will make sure they test me just in case....if I have antibodies for Hashimotos, then I may reconsider thryoid meds treatment....even on the meds when I tried before, my numbers were sooooooo perfect...everyone on Mary's board was jealous....but I still felt so awful....actually I feel awful now, but better than I did at that time! Thanks for the tip.... Jaon

What is hashimotos? This is the first I have ever heard of it????

What is hashimotos? This is the first I have ever heard of it????

What is hashimotos? This is the first I have ever heard of it????

louisa, hashimoto is an autoimmune disease of the thyroid........the antibodies kill off your own thyroid production and it can wreck havoc on a person from head to toe.........just google the name and you can find tons of info about it.........good luck

I am so glad to have found this! I have been on this site for two years trying to deal with horrific meno symptoms. I had grave's 10 years ago and begged endo to do blood five times in this nightmare and he keeps telling me I was fine, blood work was normal. I finally switched endos and the first trip to the new one found elevated hashi's with borderline grave's. I have actually thought i was going crazy for two years, absolutely incredible anxiety and related symptoms. Now I just have to hang in there till I can try and get feeling better.

Hi Lidge,
I also have Hashi's. One thing good thyroid docs know is that when one has hashi antibodies, the TSH is totally unreliable as an indicator of thyroid function. TSH is a pituitary hormone, it does not show the actual levels of the thyroid hormones T3 and T4. A much better test is to measure the levels of FREE T3 and FREE T4. I emphasize FREE because that is the unbound hormones that are actually active and able to be used. And even with those, some docs will say your levels are 'normal' when in actuality they are on the low side of normal and most people feel at their best if their levels are at the upper level of the 'normal' range.

I am on many thyroid forums, have spent hundreds of hours researching this, and can tell you that most endos are useless when it comes to proper thyroid treatment. They are so TSH-focused that they totally ignore clinical symptoms or other parameters, and also ignore all the studies that show there can be symptoms if the TSH is over 2. The AACE (American Association of Clinical Endocrinologists) has set a new normal range of 0.3-3, yet most endos feel that if it isn't over 5, you're fine.

There are also studies showing that hashi's can manifest for several years with only mental symptoms, such as anxiety, depression, etc. and during that time the labs will look normal. But a doc that knows his/her stuff on hashi's will treat anyway.

As for Shames, I think he and other well-known thyroid docs that write books are very good at what they know, but I feel their fees are outrageous. They have become so popular and so many people want an appointment that they decide they want less patients but more money. I truly think you can get just as good advice on some of the good thyroid forums. You can post and ask for good thyroid docs in your area and most of the good ones are not endos.

PM me if you want the websites.