My mom's thyroid issues (Hashimoto's?) LONG

[essnce629]

So I posted on here almost 2 years ago (April 2011) when my mom was first diagnosed with low thyroid levels. At the time, her TSH levels were 7.95 and her primary doctor was telling her that normal TSH levels were 5.50 or lower. Everything I read on here and online said this was old school thinking and current recommendations are levels that are way lower (1.5 or lower?). Her doctor is young (8 yrs of experience and 2 maternity leaves during that time) and when she asked about seeing an endocrinologist (at my suggestion) she was told her primary doctor is more than qualified for handling thyroid issues. My mom was also vitamin D deficient at the time and her doctor told her to take just 1000 IU of vitamin D a day saying that high levels of vitamin D are not really needed. Needless to say, my mom was still deficient when she was retested. So my mom was started on Levothyroxine back in April of 2011 and her doctor tests her thyroid levels just once a year! That doesn't seem normal to me-- shouldn't they retest her a few weeks after starting the med to see if it's working and if the dose needs to be adjusted? So, here we are almost 2 years later and my moms latest TSH levels are now 6.42. She's on 75mcg of Levothyroxine once a day. Her T3 level was 75 and her T4 level was 1.3. So in almost 2 years are numbers are still very far from normal. Her doctor told her that the thyroid is "very slow acting" and any changes take a long time. This seems like balony to me. If that's the case then it will take 5 more years for her TSH levels to get to a normal level!

I'm still pushing for her to see an endocrinologist (or maybe even an immunologist?) and get more tests done-- like thyroid antibodies, etc for Hashimoto's. She had a pretty severe case of vertigo (woke up and the room was spinning for a good 10 minutes) a little over a month ago and I read that vertigo is often common with Hashimoto's. And yesterday she woke up covered in head to toe hives that continued to worsen throughout the day (she sent me pics and it looked like she had smallpox!) She ended up in urgent care and got a shot of prednisone, along with a prescription for oral prednisone and Zyrtec. I talked to her today and she's still covered head to toe in them. They never itched though and she didn't have any oral allergy symptoms. I did some more googling and found out that random hives are also common in those with Hashimoto's since it's an autoimmune issue.

So it's clear my mom still has a thyroid issue. Do you think the vertigo and hives are related? She's been eating super clean this past month as she just completed her Whole30 yesterday. She is allergic to shrimp (lips puff up and her throat closes). She ate tilapia from Costco the night before the hives incident. Could it be a cross contamination with shrimp issue?

She just found out she can no longer see her regular doctor since she changed insurance, which I think is a good thing. She has an HMO now though so she'll need a referral from a primary care provider before she can see an endocrinologist or other specialist. I guess what I'm asking is once she finds an new primary care doctor, what questions should she ask or tests should she request to get to the bottom of these thyroid issues? And should she ask for her Levothyroxine dose to be increased? She said when the doctor had her taking it twice a day before they told her it was making her heart beat too fast and they decreased the dose again. Maybe she needs a different med?


Oh, and I know thyroid issues are hereditary right? My great-grandma had hypothyroidism as well. I just checked my levels-- my TSH from last month was 2.60. Is that too high? It was 1.81 back in December 2011. Should I tell my doctor about my family history and ask for additional tests for myself? I've never noticed any symptoms of low thyroid.

[queenmama]

I don't know much about Hashis. My mom had Graves and had the radioactive iodine treatment before I was born and now she's hypo.

I have heard conflicting things about heredity, but I have hypo and my maternal grandmother and a cousin have had thyroid issues as well.

I'm curious about the vertigo. I have dealt with it for years. Mine tends to be debilitating, though. I had it yesterday and couldn't move my head for hours without feeling like I was going to vomit. I'm having lingering effects today but I can move around now, at least. I would love to hear from others with thyroid disorders whether this is common!

Lara

[Melbel]

The vertigo, low vitamin D, rashes and thyroid issues are also prevalent with Lyme Disease (and possibly Bartonella), so I would include it in the differential diagnosis. I would be happy to email you guidance re. testing, since the tests are not accurate (missing up to 70% or actual cases).

There is a FB group for Thyroid issues that would be helpful for guidance on testing - https://www.facebook.com/groups/stopthethyroidmadness/?ref=ts&fref=ts

I have found many of the people on my Lyme groups to be very helpful and informative. I have heard positive feedback regarding the thyroid group linked above.

[essnce629]

The vertigo, low vitamin D, rashes and thyroid issues are also prevalent with Lyme Disease (and possibly Bartonella), so I would include it in the differential diagnosis. I would be happy to email you guidance re. testing, since the tests are not accurate (missing up to 70% or actual cases).

Is there Lyme Disease in CA? My mom has lived in southern CA for the past 29 years mostly. Other than that we lived in Germany for 2 years and Italy for 6 months when I was a kid (21+ years ago). She's never lived on the east coast.

[KLD313]

TSH is slow to react, maybe that's what the Dr. meant? That's why Drs shouldn't prescribe medicine based on TSH alone and should use FT4.

I don't have Hashi's but I do have Graves. There's a good yahoo group called The_Thyroid_Support_Group. I know with Graves too much medication can cause hives, i'm not sure about hashi's.

She needs to have testing done way more frequently. Once it stabilizes they can space the testing out more but at first it needs to be frequently.

[fedoragirl]

I don't have hives or vertigo...yet but I do have Hashimotos. I was just diagnosed 6 months ago, given a prescription and will be checked every 6 months. In my case, I got medication to address T4 and T3 levels since I was feeling blue, gaining weight, etc. My dr. said that these symptoms can occur when the T3 is also "compromised." I also take Selenium with my medication. I haven't noticed any difference in my weight but my mood is much better. I also take Vit. D 2000 IU everyday. I do this on my own though.
I would get a second opinion and go from there.

[Aishe]

Oh, and I know thyroid issues are hereditary right? My great-grandma had hypothyroidism as well. I just checked my levels-- my TSH from last month was 2.60. Is that too high? It was 1.81 back in December 2011. Should I tell my doctor about my family history and ask for additional tests for myself? I've never noticed any symptoms of low thyroid.

IIRC, the new range for TSH is 0.3 to 3.0. So you're still in the normal range. Your mom, however, is not. My endocrinologist would not be at all happy with her levels, and the idea that it might take years to get her in the normal range (if that is indeed what the doctor is saying) is bogus. A good doctor would be testing her every couple of months (I think? certainly more often than once a year!) until she was under 3.0. Once she's stabilized then testing once a year is appropriate. I think it's really hard to say if the other symptoms - the vertigo and hives - are related to her thyroid, but an attentive doctor should be able to suss out what's really going on. She needs an endocrinologist who specializes in thyroid disorders. Endos are not all created equal and some still go by the old range.

[Melbel]

Is there Lyme Disease in CA? My mom has lived in southern CA for the past 29 years mostly. Other than that we lived in Germany for 2 years and Italy for 6 months when I was a kid (21+ years ago). She's never lived on the east coast.

Absolutely. Lyme has been diagnosed in all 50 states. There are hot pockets in California, and it is prevalent in Europe. I believe I contracted Lyme while studying abroad in Europe in 1995. Commercial labs here test for a single strain of Lyme that is common in the NE. I suggest that she test using iGeneX (out of California) to cover more strains of the bacteria. I do not know if she has Lyme or not, but it should at least be considered given her symptoms (and the risk of progressive, potentially permanent decline if Lyme is missed).

[Green_Tea]

I have Hashimoto's. My endocrinologist would be pretty horrified by those numbers. I was tested last week, and my TSH is a 1.9. My doctor was happy with that. I'd encourage your mom to see an endocrinologist ASAP. My OB sent me to and endo for much lower numbers.

There is a strong genetic link with Hashimoto's - I have it, two of my aunts have it, and my grandmother had it. I would mention it to my PCP if I were you, just so they can keep an eye on it. Your current TSH sounds fine, though.

[Indianamom2]

Well, I don't have Hashimoto's, but (and don't laugh) my cat has an underactive thyroid and she was getting far more frequent and better care/monitoring than it sounds like your mom was getting.

Definitely get to an endocrinologist at the very least.

[megs4413]

I'm sorry I didn't ready any of the replies, so this could be repeat info...

I was diagnosed with Hashi's 10 years ago.

It has been my experience that PCPs just love to tell you that they can "handle" your thyroid disease. I think it's best to at least get an initial eval and follow up with an endo. So, YES, have her see one!

the lab value ranges have changed and most doctors still don't know. it's very annoying. the new range is .3-3, though some people can be symptomatic high or low even if they're it he "accepted" value range. this is one reason why an endo is especially valuable so that they treat to symptom relief, not just acceptable labs. this is especially true in Hashi's.

Furthermore, the generic levo is not the best option. I would suggest asking the doc about writing for brand-specific meds like synthroid. none of my docs have EVER suggested I take the levo.

I hope she gets the help she needs soon!

ETA: and yes, she should have her levels rechecked after starting treatment so that you can gauge how the dosage is working. I feel like my docs always wait at least 2 months, but no more than 3. once a year is enough once you get that initial adjustment correct, but that initial adjustment can take several visits to get right!

[Green_Tea]

Furthermore, the generic levo is not the best option. I would suggest asking the doc about writing for brand-specific meds like synthroid. none of my docs have EVER suggested I take the levo.



:yeahthat:

My endo always writes "brand medically necessary" on my script because he wants me on Synthroid, not the generic.

[happymomma]

I was diagnosed with Graves about 6 months ago. Your Mom really needs to find a new endocrinologist. The endocrinologist that she saw was inept. I went through 4 endocrinologists before finding the right one. Your Mom should be getting her bloodwork done at least once a month for awhile until she is stabilized. I have flip flopped from really hyper to hypo within a month. If I wasn't getting my bloodwork done every 4 weeks I wouldn't have know that I was flipping. In addition, when my thyroid hormones went hypo I also broke out in hives. Finding the yahoo support group has been tremendous help. I am forever in debt to KLD313 for referring me to the support group. They have amazing insight and was the one that taught me everything that I have learned. I still have a lot to learn but at least I know where to turn to. If I hadn't found out about the Graves support group I would have followed my original endocrinologist's advice. She wanted me to either do radioactive iodine or surgery to get rid of my thyroid. Instead I am managing it right now. The endocrinologist sees me every 4 weeks still and he analyzes 6 things. The most important is TSH, FT4, FT3, TRab and TSI. I can't remember the other 2. But have your Mom find a better doctor. It is so worth it. I am still not completely normal but I feel fine.

[essnce629]

Thanks SO much everyone! I'm going to forward her this thread and I'll call her after I get the kids to go to bed. I've been telling her to please see an endocrinologist for 2 years now. I'm just hoping now she will. I think it's just all too overwhelming for her. How do we go about finding a good endocrinologist who specializes in thyroid issues? I know many work mostly with diabetes or reproductive/fertility issues. My mom is in San Diego. She had to stay home from work again today due to the hives and I spent several hours online trying to help find her a new primary care provider that accepts her new insurance which is an HMO now.



She needs to have testing done way more frequently. Once it stabilizes they can space the testing out more but at first it needs to be frequently.



ETA: and yes, she should have her levels rechecked after starting treatment so that you can gauge how the dosage is working. I feel like my docs always wait at least 2 months, but no more than 3. once a year is enough once you get that initial adjustment correct, but that initial adjustment can take several visits to get right!

Ok, so I'm not crazy! I understand testing once a year once stable, but I would think it would have to be no less than every 3 months or so to see how the body is handling the medication.


The endocrinologist that she saw was inept. I went through 4 endocrinologists before finding the right one. Your Mom should be getting her bloodwork done at least once a month for awhile until she is stabilized. I have flip flopped from really hyper to hypo within a month. If I wasn't getting my bloodwork done every 4 weeks I wouldn't have know that I was flipping. In addition, when my thyroid hormones went hypo I also broke out in hives. Finding the yahoo support group has been tremendous help. I am forever in debt to KLD313 for referring me to the support group.

She's never seen an endocrinologist, just her regular primary care doctor, who she no longer can go to since she changed insurance. I will look into the Yahoo support group. She's not much of an online person or researcher though, so it will have to be me. I just hope once we find a good endo and she gets a referral, she'll be in good hands from there.

[essnce629]

Oh, and does anyone have any good thyroid books they'd recommend? She's not a big online researcher, but she does like to read health books and does have a kindle. She'd need a "Thyroid 101" type book, because right now, the only info she's been going on is what her PCP has been telling her and that seems all wrong!

[essnce629]

Absolutely. Lyme has been diagnosed in all 50 states. There are hot pockets in California, and it is prevalent in Europe. I believe I contracted Lyme while studying abroad in Europe in 1995.

Do you know what areas in CA are hot pockets? She's lived in San Diego for the past 17 years and Fallbrook (which is pretty rural) for 5 years. She was born and raised in Los Angeles.

[KLD313]

Google Mary Shomon. She has an about.com site, FB page, twitter account. She's amazing, especially for hypo issues. There's a section on the about.com site listing top thyroid doctors. She also wrote some books.

[Melbel]

Do you know what areas in CA are hot pockets? She's lived in San Diego for the past 17 years and Fallbrook (which is pretty rural) for 5 years. She was born and raised in Los Angeles.

Here are is a map by county: http://www.lymedisease.org/california/california_map.html

Note that there are other downloadable resources to the left that discuss Lyme in Southern California and issues with underreporting. The CDC concedes that there are 6-12x more cases than actually reported that meet CDC criteria. Many Lyme experts believe that the actual number is exponentially higher. Our son was repeatedly denied Lyme testing because it is supposedly "rare" in Florida by doctors who relied upon the CDC's artificially low numbers. Unfortunately, there is significant misinformation about Lyme Disease, which results in many being misdiagnosed.

[LizLemon]

the lab value ranges have changed and most doctors still don't know. it's very annoying. the new range is .3-3, though some people can be symptomatic high or low even if they're it he "accepted" value range. this is one reason why an endo is especially valuable so that they treat to symptom relief, not just acceptable labs. this is especially true in Hashi's.


It's not quite this cut and dry. The lab value ranges actually have not changed and are still the same (I have never seen a reference range of 0.3 - 3 and get labs from various commercial labs and hospitals). The endocrinology academy recommended the shift as megs described, but as most changes in medicine, this was not a universally supported change. As I see it, the problem is that endocrinologists are still debating over whether the TSH values of 3 - 4.5/5.5 actually represent hypothyroid that needs to be treated.

In the meantime, since the ranges being reported by the labs have not changed, I would imagine that many non-endo physicians are using the old values for diagnosis and treatment. This may particularly apply to PCPs, who are responsible for a broad knowledge base and may not be aware of these recommendations for TSH.

Others may have different experiences, but I find endocrinologists can be among the worst for not necessarily looking at symptoms or how the patient is feeling and instead just "treating the numbers." It seems like they should be able to treat to symptom relief, but I feel like I do that more for thyroid in my field, but my experience with them is based on numbers, numbers, numbers.

[essnce629]

Google Mary Shomon. She has an about.com site, FB page, twitter account. She's amazing, especially for hypo issues. There's a section on the about.com site listing top thyroid doctors. She also wrote some books.

Thanks! She has one of the most highly rated thyroid books on Amazon, "Living Well with Hypothyroidism," so I ordered the kindle version for my mom. She should get it any minute!

[essnce629]

Others may have different experiences, but I find endocrinologists can be among the worst for not necessarily looking at symptoms or how the patient is feeling and instead just "treating the numbers." It seems like they should be able to treat to symptom relief, but I feel like I do that more for thyroid in my field, but my experience with them is based on numbers, numbers, numbers.

This reminds me of an article I came across last night:

Why an Endocrinologist or Thyroidologist Should Probably Not Be Your Thyroid Doctor
http://thyroid.about.com/b/2009/03/08/endocrinologist-thyroidologist-thyroid-doctor.htm

And KLD313, I just realized this article is written by Mary Shomon!


LizLemon-- what field are you in?

[KLD313]

This reminds me of an article I came across last night:

Why an Endocrinologist or Thyroidologist Should Probably Not Be Your Thyroid Doctor
http://thyroid.about.com/b/2009/03/08/endocrinologist-thyroidologist-thyroid-doctor.htm

And KLD313, I just realized this article is written by Mary Shomon!


LizLemon-- what field are you in?

LOL! She's the goto for Thyroid advice.

I agree about endos. You have to advocate for yourself. I had to beg to get my labs drawn earlier than they wanted to check them and my TSH was at 20 and I started out 3 weeks earlier severely hypER. There are some good endos out there you just have to find them. Easier said than done unfortunately.

[niccig]

LOL! She's the goto for Thyroid advice.

I agree about endos. You have to advocate for yourself. I had to beg to get my labs drawn earlier than they wanted to check them and my TSH was at 20 and I started out 3 weeks earlier severely hypER. There are some good endos out there you just have to find them. Easier said than done unfortunately.

Yes, there are good endos. Mine is willing to treat symptoms and not just numbers, he'll tweak meds etc.

Latia, he's out of USC downtown, so might be too far for you to go, but I can give you the contact details.

[megs4413]

It's not quite this cut and dry.

Others may have different experiences, but I find endocrinologists can be among the worst for not necessarily looking at symptoms or how the patient is feeling and instead just "treating the numbers." It seems like they should be able to treat to symptom relief, but I feel like I do that more for thyroid in my field, but my experience with them is based on numbers, numbers, numbers.

Maybe I've been lucky with endos!

[maestramommy]

One of my sisters has Hashimoto's. She actually found out about it because her goiter was getting enlarged. You'd never know it weight wise though because she's pretty lean (she does eat healthy and exercise). As for heredity, my dad had HyPERthyroidism in his late 30s. My mom's twin has hypothyroidism, but I've had my thyroid tested before and I'm fine, I think my other sister is too.

[SnuggleBuggles]

Hypothyroidism runs in my family, not sure about Hashimoto's (which I have). Both sides of the family. So, when I gained weight unexpectedly (diet and exercise were very good) I thought I should get checked. Sure enough, I tested hypo.

My friend has Hashimoto's and has been dealing with hives. She had no other signs of Hashis except bloodwork and she really, really had to advocate for treatment of the Hashi's. It has not been resolved as medicine for hypothyroid pushed her very hyperthyroid and it was a very small dose. So, no meds and ongoing hives. It's been a really rough road for her for the past few years. She was gluten free for a few months and primal for a few- neither really helped the symptoms. She reads a lot and has been really looking for an answer and a good care provider.

[minnie-zb]

Others may have different experiences, but I find endocrinologists can be among the worst for not necessarily looking at symptoms or how the patient is feeling and instead just "treating the numbers." It seems like they should be able to treat to symptom relief, but I feel like I do that more for thyroid in my field, but my experience with them is based on numbers, numbers, numbers.

I've had the same experience. My experience with endocrinologists for Hashimoto's (my mom and I both have it) has been less than lackluster. I think it is more important to find a doctor who listens to you -- whether it is a primary care or an endocrinologist.

When I'm given a new med for my thyroid, I have to go back 30-60 days later to have it checked via bloodwork. Then it might be a 6 month check up after that -- depending on the results.

ETA: Hashimoto's is an autoimmune disease and it should be treated or taken seriously. Once you have one autoimmune disease the odds greatly increase you will develop another. Climbing down off my soapbox now.

[Tinkerbell313]

I have Hashi's and its a pain in the butt. I am on levothyroxine which I have been told is better thatn Synthoid but I think it just depends on your body.

I am actually researching looking for an MD that will actually prescribe either Armour or another form of T3 and/or T4 meds as I am finding the standard run-of-the-mill do not work for me.

I have gone to several endocrinologists and most seem to treat the lab results.:thumbsdown::thumbsdown::thumbsdown::thumb sdown: So I am probably going to have to go to a doctor that does not take any insurance. There are several recommended and all are on a cash/credit basis.

My antibodies are way off the charts and it gets very difficult to function at times. I am very achy, tired, moody. I am a WOTH mom and on weekends I have to take several naps to get me through the day. At the office, I just endure the torture.

I am in the process of removing gluten from my diet to see if that will help. I actually started several months ago and noticed that my energy levels had increased.

I hope your mom gets the help she needs. Hashi's is very frsutrating.

[wendibird22]

There's a strong link between Hashi's and gluten intolerance. GI and Celiac can cause vertigo, foggy brain, low vit D, hives (and more specifically dermatitis herpetiformis). You may want to add that to the list of things to exclude.

[SnuggleBuggles]

There's a strong link between Hashi's and gluten intolerance. GI and Celiac can cause vertigo, foggy brain, low vit D, hives (and more specifically dermatitis herpetiformis). You may want to add that to the list of things to exclude.

If her Mom has been doing Whole 30, would she have eliminated those culprits (gluten)?