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Newly Diagnosed
Hello everyone! I am totally new to this and am needing some help figuring out which steps I should take next.
For over 10 years, I have been battling angioedema, severe dizziness, hives, gastrointestinal bloating and pain, etc. Five years ago, my doctor told me that it was clear I was allergic to peanuts, tree nuts, and soy, and that I should avoid those foods. He said that we could do allergy panels, but that since the foods clearly seemed to trigger these "anaphylactic" episodes, it would be a waste of money. As time went on, I developed problems with more and more foods (milk, white bread, apples, oranges, bananas, onions, tomatoes, the list goes on and on...).
Recently, I became so miserable with this state of life and asked for an allergy panel. The tests came back negative, and the doctor had no answer except to keep avoiding foods that made me feel bad. I pushed a little more, and he decided to do additional tests. In the meantime, he decided to put me on anti-depressants because I was so fatigued and emotionally drained (another story for another time). The tests came back showing my TSH levels slightly elevated (10.710, ref 0.450-4.500 uIU/mL), as well as a slightly elevated RF (30.1, ref. 0.0-13.9 IU/mL).
With these findings, I found myself at the Rheumatologist's. 12 vials later, the only answer he could give me was that my Vitamin D level was very low (16.5, ref 30 - 100 ng/mL) and TPO Ab was also elevated (88.0, ref 0 - 34 IU/mL) indicating an autoimmune thyroid disease. He said that an immunologist might be able to tell my why I am experiencing the angioedema and allergy-like symptoms.
That said, I feel a bit overwhelmed by the symptoms I am having and the lack of information that I am getting from health professionals. I have done some reading, and it seems that a lot of my symptoms are typical for someone with Hashimoto's. However, no one else seems to be connecting these dots, so I find myself wondering if my conclusions are correct.
Can anyone tell me if what I have experienced is typical for someone with Hashimoto's? Also, with this information, what is my next step - since the doctors I currently am seeing seem to be only interested in what the numbers say, and are only willing to treat the symptoms as they present.
For over 10 years, I have been battling angioedema, severe dizziness, hives, gastrointestinal bloating and pain, etc. Five years ago, my doctor told me that it was clear I was allergic to peanuts, tree nuts, and soy, and that I should avoid those foods. He said that we could do allergy panels, but that since the foods clearly seemed to trigger these "anaphylactic" episodes, it would be a waste of money. As time went on, I developed problems with more and more foods (milk, white bread, apples, oranges, bananas, onions, tomatoes, the list goes on and on...).
Recently, I became so miserable with this state of life and asked for an allergy panel. The tests came back negative, and the doctor had no answer except to keep avoiding foods that made me feel bad. I pushed a little more, and he decided to do additional tests. In the meantime, he decided to put me on anti-depressants because I was so fatigued and emotionally drained (another story for another time). The tests came back showing my TSH levels slightly elevated (10.710, ref 0.450-4.500 uIU/mL), as well as a slightly elevated RF (30.1, ref. 0.0-13.9 IU/mL).
With these findings, I found myself at the Rheumatologist's. 12 vials later, the only answer he could give me was that my Vitamin D level was very low (16.5, ref 30 - 100 ng/mL) and TPO Ab was also elevated (88.0, ref 0 - 34 IU/mL) indicating an autoimmune thyroid disease. He said that an immunologist might be able to tell my why I am experiencing the angioedema and allergy-like symptoms.
That said, I feel a bit overwhelmed by the symptoms I am having and the lack of information that I am getting from health professionals. I have done some reading, and it seems that a lot of my symptoms are typical for someone with Hashimoto's. However, no one else seems to be connecting these dots, so I find myself wondering if my conclusions are correct.
Can anyone tell me if what I have experienced is typical for someone with Hashimoto's? Also, with this information, what is my next step - since the doctors I currently am seeing seem to be only interested in what the numbers say, and are only willing to treat the symptoms as they present.
COMMUNITY LEADER
The addition of the B12 and D3 should help you some.
Wish you luck in finding a good doctor.
Wish you luck in finding a good doctor.
I was on 50 mcg of Levothyroxine for the past 3 months. However, my symptoms started getting worse again in the past 3 weeks. On Monday, my TSH levels came back a little over 7 (7.34.. I think), so my doctor raised my Levothyroxine to 75 mcg.
The Rheumatologist did put me on Vitamin D2 at first. I was taking 50,000 units 1x weekly. However, the D2 was giving me migraines and joint pain (due to peanut or soy sensitivity), so he switched me to 5,000 units daily of D3.
After doing some reading and learning that B12 can also be deficient with Hashi's, I started taking 500 mcg of B12 a day.
I have asked my FB friends who they would recommend for a GP, so I am going to take that list and start "interviewing" them to see which ones make the list. I definitely want someone who is going to listen because no one has for the past 7 years, and I'm tired of being sick.
Thanks so much for the advice. As soon as I figure out which doctor I am going to visit, I will report back how it goes :)
The Rheumatologist did put me on Vitamin D2 at first. I was taking 50,000 units 1x weekly. However, the D2 was giving me migraines and joint pain (due to peanut or soy sensitivity), so he switched me to 5,000 units daily of D3.
After doing some reading and learning that B12 can also be deficient with Hashi's, I started taking 500 mcg of B12 a day.
I have asked my FB friends who they would recommend for a GP, so I am going to take that list and start "interviewing" them to see which ones make the list. I definitely want someone who is going to listen because no one has for the past 7 years, and I'm tired of being sick.
Thanks so much for the advice. As soon as I figure out which doctor I am going to visit, I will report back how it goes :)
COMMUNITY LEADER
You definitely need to find a different doctor. What dose of synthroid are you on and how long have you been on it?
Selenium can be toxic if levels get too high, but this is very rare. You should try to get your levels tested to see what they are.
Iodine is necessary for healthy thyroid function, but once the thyroid malfunctions (Hashimoto's/hypothyroidism), iodine is often contradindicated. Once Hashimoto's has begun the destruction process, there is no way you can reverse the damage that's already done.
It sounds as though your thyroid levels are not adjusted properly. You really need the Free T3 and Free T4 tests. There are websites from which you can order these tests, if your doctor refuses to do them. One that I've used it healthcheckusa. For about $85, you get a lab order to be taken to a lab near you, get the blood drawn, then a report is e-mailed to you within a couple of days. Once you have these results, you can take them to your doctor and try to get a med adjustment, or if you're picking a new doctor, you will already have the tests in hand to show her/him.
When looking for a new doctor, you can "pre interview" them, by calling and talking to a nurse. You should find out if the doctor is willing to test the Free T3 and Free T4, whether or not s/he treats by using TSH only. Ask if s/he is willing to prescribe T3 medication if needed and whether or not s/he will prescribe dessicated thyroid medication. Some members have even faxed questionnaires to various doctors to find one who will work with them.
Along with getting your selenium, FT3, FT4 and TSH tested, you should also get vitamin B12 and calcium tested.
Are you supplementing for the low vitamin D? That deficiency can cause multiple issues.
Selenium can be toxic if levels get too high, but this is very rare. You should try to get your levels tested to see what they are.
Iodine is necessary for healthy thyroid function, but once the thyroid malfunctions (Hashimoto's/hypothyroidism), iodine is often contradindicated. Once Hashimoto's has begun the destruction process, there is no way you can reverse the damage that's already done.
It sounds as though your thyroid levels are not adjusted properly. You really need the Free T3 and Free T4 tests. There are websites from which you can order these tests, if your doctor refuses to do them. One that I've used it healthcheckusa. For about $85, you get a lab order to be taken to a lab near you, get the blood drawn, then a report is e-mailed to you within a couple of days. Once you have these results, you can take them to your doctor and try to get a med adjustment, or if you're picking a new doctor, you will already have the tests in hand to show her/him.
When looking for a new doctor, you can "pre interview" them, by calling and talking to a nurse. You should find out if the doctor is willing to test the Free T3 and Free T4, whether or not s/he treats by using TSH only. Ask if s/he is willing to prescribe T3 medication if needed and whether or not s/he will prescribe dessicated thyroid medication. Some members have even faxed questionnaires to various doctors to find one who will work with them.
Along with getting your selenium, FT3, FT4 and TSH tested, you should also get vitamin B12 and calcium tested.
Are you supplementing for the low vitamin D? That deficiency can cause multiple issues.
Well, I went back to my general practitioner yesterday. He was not interested in doing any tests other than TSH, saying that the rheumatologist should have done any other tests that were needed. I told him the only thing that was tested were my anti-thyroid antibodies, which were elevated - to which he responded, "So it's autoimmune?" Obviously, he had not even read my test results.
I asked if there was anything else that could be done, any other treatments. He responded, "No. Just taking synthroid. You should be fine if you keep doing that."
Needless to say, today I am firing both my GP and the Rheumatologist.
I asked if there was anything else that could be done, any other treatments. He responded, "No. Just taking synthroid. You should be fine if you keep doing that."
Needless to say, today I am firing both my GP and the Rheumatologist.
Thanks for the information. I do agree that it seems the doctors are afraid to step out of their comfort zone a bit. I have looked into Functional Medicine as a possible alternative, but the practitioners in that field generally do not accept insurance, making them a costly alternative.
You are right about one thing, all of this does make me feel absolutely terrible. I'm glad to know which tests to start with, as previously, I was pretty much just guessing what to ask for with my General Practitioner.
The reason I asked about foods rich in selenium particularly, is that I seem to have the worst "allergic" reactions to foods that are indicated as good sources of selenium. I was wondering if my levels being out of balance and this could be cause reactions.
The other reason I ask about selenium and iodine is because I have read that making sure they are balanced properly can help alleviate some of the symptoms.
You are right about one thing, all of this does make me feel absolutely terrible. I'm glad to know which tests to start with, as previously, I was pretty much just guessing what to ask for with my General Practitioner.
The reason I asked about foods rich in selenium particularly, is that I seem to have the worst "allergic" reactions to foods that are indicated as good sources of selenium. I was wondering if my levels being out of balance and this could be cause reactions.
The other reason I ask about selenium and iodine is because I have read that making sure they are balanced properly can help alleviate some of the symptoms.
COMMUNITY LEADER
Many doctors don't want to get out of their own comfort zone to try to help patients; this may have something to do with the number of malpractice suits or something. Unfortunately, all too often, we have to research our symptoms and ask for specific tests that might point us in the right direction.
If we believe the rheumy and figure that you don't have RA, then we'd pretty much have to figure that TPOab would be due to Hashimoto's Thyroiditis.
With Hashimoto's, the antibodies continually attack the thyroid, so it produces less and less hormones, which causes the pituitary to put out more TSH, in hopes of stimulating the thyroid. As this process takes place, all kinds of weird things can happen...........
Since TSH is a pituitary hormone, it's simply an "indicator" for thyroid problems. At this point, you need to have Free T3 and Free T4 tested. These are the actual hormones the thyroid produces, and without which, you will really feel like ----umm - well, like crap........
Along with Free T3 and Free T4 (make sure you specify FREE T3 and FREE T4 or you will totals, which are useless), you should also ask for vitamin B12, selenium, RBC magnesium, calcium and zinc ........
Deficiency in any of these vitamins/minerals can also cause all types of weird symptoms, as can your vitamin D deficiency.
Iodine is usually (not always) contraindicated with Hashimoto's; it should only be used under the supervision of a doctor experienced in administering it....
I don't understand your comment that foods with iodine or selenium seem to be making you sick... what foods are you eating that are rich in these nutrients? Possibly, there's something else making you feel sick?
If we believe the rheumy and figure that you don't have RA, then we'd pretty much have to figure that TPOab would be due to Hashimoto's Thyroiditis.
With Hashimoto's, the antibodies continually attack the thyroid, so it produces less and less hormones, which causes the pituitary to put out more TSH, in hopes of stimulating the thyroid. As this process takes place, all kinds of weird things can happen...........
Since TSH is a pituitary hormone, it's simply an "indicator" for thyroid problems. At this point, you need to have Free T3 and Free T4 tested. These are the actual hormones the thyroid produces, and without which, you will really feel like ----umm - well, like crap........
Along with Free T3 and Free T4 (make sure you specify FREE T3 and FREE T4 or you will totals, which are useless), you should also ask for vitamin B12, selenium, RBC magnesium, calcium and zinc ........
Deficiency in any of these vitamins/minerals can also cause all types of weird symptoms, as can your vitamin D deficiency.
Iodine is usually (not always) contraindicated with Hashimoto's; it should only be used under the supervision of a doctor experienced in administering it....
I don't understand your comment that foods with iodine or selenium seem to be making you sick... what foods are you eating that are rich in these nutrients? Possibly, there's something else making you feel sick?
No one tested for T3 or T4. I see my General Practitioner in a little over a week and can ask him to do the tests.
The Rheumatologist said I do not have RA, and that my RF was too low to be concerned at this time. He gave no explanations as to why it would be elevated, nor did he seem to think that the elevated TPOab was not something for him to deal with either.
At this point, I kind of feel like unless I tell them what to do, nothing is going to get done. Problem is, I'm not the one with years of medical training, so how in the world do I know what to tell them to do without a little direction myself?
Are there any other tests that I need? Do I need to know anything about my Iodine or Selenium levels (since foods with these seems to be making me very sick)?
The Rheumatologist said I do not have RA, and that my RF was too low to be concerned at this time. He gave no explanations as to why it would be elevated, nor did he seem to think that the elevated TPOab was not something for him to deal with either.
At this point, I kind of feel like unless I tell them what to do, nothing is going to get done. Problem is, I'm not the one with years of medical training, so how in the world do I know what to tell them to do without a little direction myself?
Are there any other tests that I need? Do I need to know anything about my Iodine or Selenium levels (since foods with these seems to be making me very sick)?
COMMUNITY LEADER
TPOab can be present in other autoimmune diseases, including RA; however, with your elevated TSH and your symptoms, it would seem that you might have hypothyroidism.
I'm rather surprised that with all the blood work done, there was not a Free T3 or Free T4 done; or maybe there was, with results in the "normal" ranges, so you didn't list them? Free T3 and Free T4 are the active thyroid hormones, with Free T3 being the one used directly, by the cells. If those were tested, could you please post the results, with reference ranges? If they weren't tested, can you get them done?
I'm rather surprised that with all the blood work done, there was not a Free T3 or Free T4 done; or maybe there was, with results in the "normal" ranges, so you didn't list them? Free T3 and Free T4 are the active thyroid hormones, with Free T3 being the one used directly, by the cells. If those were tested, could you please post the results, with reference ranges? If they weren't tested, can you get them done?
Autoimmune diseases listed as common causes of urticaria [hives] and angiooedema are Hashimoto's Thyroiditis, Systemic Lupus Erythematosus (SLE), vasculitis, and autoimmune hepatitis. Food allergies or food intolerances (intolerances do not show up on blood tests) are also listed symptoms of Hashimoto's Thyroiditis. Rheumatoid arthritis is also one of the conditions that can be associated with Hashimoto's Thyroiditis. Vitamin D deficiency is common with autoimmune diseases (and in general).
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