Hashimotos Disease... Something Else

[kayjay]

hello all, My diagnosis of Pots was confirmed at the Mayo clinic so I know that I have but I feel like I may have something else.

I usually have a slight temp- under 100. I get cold very easily ( I wear my down coat indoors)

I have major hair loss (also in my eyebrows)

I have very heavy periods with bleeding in between (on and off birth control)

I have pain though out my body- also slight sore throat and sometimes trouble swallowing.

sometimes I have night sweats.

I have IBS sometimes.

I sleep all night and could sleep most of the day. I really can only do 1 thing a day then I have to sleep.

I am treating my POTS and my heart rate issues are definitly better.

I am seeing my GP on Monday and wanted to know if anyone had any suggestions about other things I should be tested for. In my gut I feel like there is something more then POTS going on with me ( I am 36 and my hormone levels are good so I don't think it could be menapause related). Thanks kari

[iheartcats]

My Rheumatogist is getting a specific blood test for me for Hashimoto's - I think it's a Thyroid ANA. She said the regular Thyroid Function I had done wasn't enough.

The main reasons, I think, are my body aches and I've weirdly lost hair in my outer eyebrow. I now have to really fix my eyebrows everyday. :/ It bothers me.

So you may want to see if you can either see a Rheum or get one of these tests. At least it's a start!

[erik]

Stuff like Sjogren's or SLE (Lupus) can zap multiple things and present in various orders (Sjogren's does not always hit the eye/saliva first)... they're also auto-immune like Hashimoto's. They can include at least a few of your symptoms. Both are "very long diagnoses" averaging 7 and 10 years respectively, if memory serves. Could give them a quick overview and see if you happen to find a couple other matching symptoms or risk-factors. Even if they don't match really well, they can be things to keep on the back-burner as possibilities.

They can include neuropathy... hence ANS damage/dysfunction. Of course, many other things can as well, as you already know If some testing comes up, it might be somewhat convenient to "widen the scope" and include seeking markers for these.

(Hair-loss + autonomic/O.H./O.I. makes me think Addisons... but I have a hairline trigger on that and you say your hormones are ok, so not likely

[shadesofgrey49]

Have you seen infectious disease people?

[kayjay]

Have you seen infectious disease people?

My white blood cell count is normal- but I do think I should be checked for lyme. When I first got sick years ago I was tested for everything.

Can Anyone tell me more about Hashimotos?

[kayjay]

My Rheumatogist is getting a specific blood test for me for Hashimoto's - I think it's a Thyroid ANA. She said the regular Thyroid Function I had done wasn't enough.

The main reasons, I think, are my body aches and I've weirdly lost hair in my outer eyebrow. I now have to really fix my eyebrows everyday. :/ It bothers me.

So you may want to see if you can either see a Rheum or get one of these tests. At least it's a start!

I think I am going to ask for this as well. My eyebrows are patchy- weird.

[kayjay]

Stuff like Sjogren's or SLE (Lupus) can zap multiple things and present in various orders (Sjogren's does not always hit the eye/saliva first)... they're also auto-immune like Hashimoto's. They can include at least a few of your symptoms. Both are "very long diagnoses" averaging 7 and 10 years respectively, if memory serves. Could give them a quick overview and see if you happen to find a couple other matching symptoms or risk-factors. Even if they don't match really well, they can be things to keep on the back-burner as possibilities.

They can include neuropathy... hence ANS damage/dysfunction. Of course, many other things can as well, as you already know If some testing comes up, it might be somewhat convenient to "widen the scope" and include seeking markers for these.

(Hair-loss + autonomic/O.H./O.I. makes me think Addisons... but I have a hairline trigger on that and you say your hormones are ok, so not likely

Erik- thanks for the input- Hopkins thought I had Lupus 6 years ago but they spun out my ana cell what ever that means and didn't know what the cells were. (just a strange speckled pattern). I am going to look of addisons and Sjogrens/.

[firewatcher]

TPO-AB (Thyroid Peroxidase Anti-bodies) and Antithyroglobulin Anti-bodies are usually high for Hashimoto's. I've had one endocrinologist completely ignore those tests, saying "that's what you get for testing," while another thinks that I will eventually go hypothyroid at some point. I had post-partum hypothyroidism and the evidence is coming in that women who have it post-partum are at increased risk for hypothyroidism later in life. Thyroid disorders are one of the most common endocrine disorders on the planet, if you had one, it wouldn't be because of ANS issues. However, once you have one autoimmune disease, you are more susceptible to getting another (if your POTS is autoimmune.)

I hope you get it figured out. Good endocrinologists are hard to find (I've been to enough of them!)

[kayjay]

TPO-AB (Thyroid Peroxidase Anti-bodies) and Antithyroglobulin Anti-bodies are usually high for Hashimoto's. I've had one endocrinologist completely ignore those tests, saying "that's what you get for testing," while another thinks that I will eventually go hypothyroid at some point. I had post-partum hypothyroidism and the evidence is coming in that women who have it post-partum are at increased risk for hypothyroidism later in life. Thyroid disorders are one of the most common endocrine disorders on the planet, if you had one, it wouldn't be because of ANS issues. However, once you have one autoimmune disease, you are more susceptible to getting another (if your POTS is autoimmune.)

I hope you get it figured out. Good endocrinologists are hard to find (I've been to enough of them!)

I do think my POTS is autoimmune and I also have endometriosis as well. Thanks for the help can you also share your symptoms? Do any of them sound like mine?

[firewatcher]

Well, I was classic Hypo-thyroid:

Tired

Incredibly emotional

Cold intolerant

High TSH levels

Overweight

Now, my TSH fluctuates (but within normal limits) and I have high Anti-thyrogolbulin antibody titers, but that is it. My thyroid is diffusely firm and enlarged, but I don't really have a goiter.

The tests for Hashi's are pretty straightforward. Finding a good endocrinologist is the key!

[MomtoGiuliana]

I have Hashimotos. It's very confusing b/c when my thyroid levels go a little low, my POTS symptoms tend to get worse, and POTS symptoms tend to mimic high thyroid levels.

Hair loss could also be iron deficiency, but i guess you have ruled that out.

Low thyroid is very common in women--like 10% of the population.

However the low grade fever and sore throat would not be Hashimoto's.

I hope you get some answers soon.

[lissy]

Sneaking in on an older post....

I'm suspecting hypothyroid and curious if just TSH and T-4 would detect it? or detect something if it was autoimmune with those basic tests?

Thanks so much I have a follow-up on Monday with endocrine doc and wanted to get this specif information so I don't just go into with no knowledge.

I know my TSH 8 months ago was 1.87 and the endo doc was willing to treat but i was in the middle of POTS DX so I waited, so who knows what its up to now....I'll know soon

Lissy

[ajw4790]

In reply more to the first post (Kayjay), I thought I would throw my 2 cents in, and say that it sounds like most could fit with iron deficient anemia. To test this the drs. need to look at your ferritin level and not just hemoglobin and hematocrit. My hair loss greatly increases as my iron decreases. I think I am getting to the point that I can feel it. You can also be cold sensitive, very fatigued, muscle twitches, pain, really so many things can be affected. The fact that you have endometriosis and heavy bleeding makes it seem even more likely.

My mom has recently had a lot of heavy bleeding, and I had told her she needs to get her iron checked. Within a week of that conversation she was complaining that her hair was falling out like mine, and hers never does that. Again I told her it is probably the iron.

I ignored what my body was telling me for a long time, because my drs. never checked it. I ate ice like it was all going to melt, I craved ice cream and everything dairy. I craved (painfully) cereal- I have NEVER ate cereal in my life. I hate the stuff! I started buying other random things like cream of wheat, to only find out it is high in iron. My mom thought I was nuts on many occasions due to what I was now eating, and I had no real explanation to why it occurred until the ferritin test. I also ate a lot of almonds and randomly started eating hummus. I had days when it was super low that I craved a hamburger so bad, and again it was like a painful knawing feeling, that my body would not let me ignore. I got more cranky and symptomatic the longer it went. It is really weird until you start to understand what is going on.

So, this is just an idea, but not necessarily the answer to everyone. But, it is always worth looking into, because it is a simple blood test.

[kayjay]

In reply more to the first post (Kayjay), I thought I would throw my 2 cents in, and say that it sounds like most could fit with iron deficient anemia. To test this the drs. need to look at your ferritin level and not just hemoglobin and hematocrit. My hair loss greatly increases as my iron decreases. I think I am getting to the point that I can feel it. You can also be cold sensitive, very fatigued, muscle twitches, pain, really so many things can be affected. The fact that you have endometriosis and heavy bleeding makes it seem even more likely.

My mom has recently had a lot of heavy bleeding, and I had told her she needs to get her iron checked. Within a week of that conversation she was complaining that her hair was falling out like mine, and hers never does that. Again I told her it is probably the iron.

I ignored what my body was telling me for a long time, because my drs. never checked it. I ate ice like it was all going to melt, I craved ice cream and everything dairy. I craved (painfully) cereal- I have NEVER ate cereal in my life. I hate the stuff! I started buying other random things like cream of wheat, to only find out it is high in iron. My mom thought I was nuts on many occasions due to what I was now eating, and I had no real explanation to why it occurred until the ferritin test. I also ate a lot of almonds and randomly started eating hummus. I had days when it was super low that I craved a hamburger so bad, and again it was like a painful knawing feeling, that my body would not let me ignore. I got more cranky and symptomatic the longer it went. It is really weird until you start to understand what is going on.

So, this is just an idea, but not necessarily the answer to everyone. But, it is always worth looking into, because it is a simple blood test.

You are right. My thyroid was fine my iron silly low! I am on birth control pills now and still have bleeding every day. I was/am eating cereal every day! Thank you for taking the time to share and help me. I just wanted to let you know that you are right! I am hopeful my hair will stopp falling out so much. I think some of it was also the major stress my body was under this past spring trying to keep me alive.

Anyway thanks!