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High TPO in new very symptomatic patient. Advice for treatment? List for PCP?
Hey there, I'm the husband.
My wife was fine in July. Then in August, everything went to hell. She has a TON of symptoms - from weight to lack of energy to fluid retention.
We initially thought it was psychological, so we've been treating it like this since Aug with almost no changes. Horrible time it has been. After feeling defeated, I just started reading for hours and I wised up at some point that it could be a symptom and not just depression/suicidality. I thought maybe Estrogen Dominance.
A test of her Estrogen/Progesterone levels show a ratio of 12. The low end is 100 and the high end is 500. Hers was 12. Top top top end of scale for Estrogen and bottom low end of scale for Prog.
Before waiting two months to see a OBGYN, I researched the ED for hours and hours, frequently seeing ED caused by thyroid dysfunction. I thought the same thing as with the depression --- what if the ED is ALSO a symptom and not a cause.....
So I chased that one down, nagged the hell out of the doc, and got her to call in a full Thyroid panel for the wife. Bam. Got it. TPOA is supposed to be under 9UI/mL....it's 301.
So the biggest concern is the insane fatigue and depression she has. It's killing her. I worry about her snapping one of these days. I really do. She says she will tell me if it gets there, but she's sobbing just getting up out of bed some days after 14 hours in bed, then going down and sitting on the couch and falling asleep sitting up. It's scary and depressing for me too.
The reason why I post is we have one of those PCP docs that if you tell him you want something, he will most the time just do it. And while I would much rather get her in to see a specialist Endo, the three in network are booked solid until JULY !! So I'm not okay with just letting the wife suffer for five months waiting to see a specialist.
So MY QUESTION IS----What can we throw at this to start trying to narrow in on a treatment...at least at the level of the PCP so we can get her some relief (because we've tried every antidepressant in the book and none help)? My research says start with 15-30mg Armour (slowly stepping up) with of course exercise and diet positive changes. Most of her levels are fine except for TPOA is off the charts, but she is HIGHLY and DEBILITATINGLY symptomatic.
Happy to add info or labs if you need/ask. Appreciate the help.
My plan that I've created on my own up to this point lol was just to have PCP (A) give referral to Endo in July, (B) referral for ultrasound of thyroid, (C) start the Armour "exploratory" trial. (D) Already starting her on Centrum once a day, (E) Just ordered Selenium 200mcg 1xday and (F) just ordered Methyl B12 5000mcg 1xday.
Anything else? Does that sound great or terrible lol? Appreciate your help.
My wife was fine in July. Then in August, everything went to hell. She has a TON of symptoms - from weight to lack of energy to fluid retention.
We initially thought it was psychological, so we've been treating it like this since Aug with almost no changes. Horrible time it has been. After feeling defeated, I just started reading for hours and I wised up at some point that it could be a symptom and not just depression/suicidality. I thought maybe Estrogen Dominance.
A test of her Estrogen/Progesterone levels show a ratio of 12. The low end is 100 and the high end is 500. Hers was 12. Top top top end of scale for Estrogen and bottom low end of scale for Prog.
Before waiting two months to see a OBGYN, I researched the ED for hours and hours, frequently seeing ED caused by thyroid dysfunction. I thought the same thing as with the depression --- what if the ED is ALSO a symptom and not a cause.....
So I chased that one down, nagged the hell out of the doc, and got her to call in a full Thyroid panel for the wife. Bam. Got it. TPOA is supposed to be under 9UI/mL....it's 301.
So the biggest concern is the insane fatigue and depression she has. It's killing her. I worry about her snapping one of these days. I really do. She says she will tell me if it gets there, but she's sobbing just getting up out of bed some days after 14 hours in bed, then going down and sitting on the couch and falling asleep sitting up. It's scary and depressing for me too.
The reason why I post is we have one of those PCP docs that if you tell him you want something, he will most the time just do it. And while I would much rather get her in to see a specialist Endo, the three in network are booked solid until JULY !! So I'm not okay with just letting the wife suffer for five months waiting to see a specialist.
So MY QUESTION IS----What can we throw at this to start trying to narrow in on a treatment...at least at the level of the PCP so we can get her some relief (because we've tried every antidepressant in the book and none help)? My research says start with 15-30mg Armour (slowly stepping up) with of course exercise and diet positive changes. Most of her levels are fine except for TPOA is off the charts, but she is HIGHLY and DEBILITATINGLY symptomatic.
Happy to add info or labs if you need/ask. Appreciate the help.
My plan that I've created on my own up to this point lol was just to have PCP (A) give referral to Endo in July, (B) referral for ultrasound of thyroid, (C) start the Armour "exploratory" trial. (D) Already starting her on Centrum once a day, (E) Just ordered Selenium 200mcg 1xday and (F) just ordered Methyl B12 5000mcg 1xday.
Anything else? Does that sound great or terrible lol? Appreciate your help.
Wow! You are such an amazing husband to be such a wonderful health and medical advocate for your wife! If only more husbands were like you. Your interest in thyroid knowledge is impressive. If I understand correctly, your wife was totally fine in July and had all of her symptoms start in August? It sounds like something might have suddenly trigger her immune system. Can you think of anything in the months previous to August that might have triggered her immune system? Does she have allergies to pollen, plants, animals, or food? Has she had any recent illnesses? If you can determine if there is any trigger of her immune system that could be removed from her environment, this might help her to feel better.
I have Hashimoto's too. I second what Gimmel said about not bothering with an endocrinologist. They will only make her worse if she followed their advice. How about going to an naturopath or someone similar?
I know that 300 TPO sounds high and alarming. If it's any reassurance, the level of antibodies do not exactly always correlate with the severity of symptoms. If they did, then when my TPO has been 20-25 times higher than your wife's, I would not be alive. When my TPO was in the upper half of 5 figures, my TSH was 0.090, FT3 was 4.0, and my FT4 was1.35. I am a thin person with Hashimoto's. Now, when my TSH was very high, my FT3 and FT4 were very low, and I gained 10 lbs until I got my medication sorted. I also do not have the more common low DHEA-s, mine is over range. I'd say on an average my TPO is around 1,500, and that is with me having no hypo symptoms. It's been slightly under 1000 several times, but not for long because something always triggers it to go up to around 1,500 again.This disease definitely effects everyone differently.
Another thing that I can say about selenium (frequently taken with vitamin E because they have a synergistic effect) is that it does not definitely reduce antibodies, at least not in my years of experience in taking it. I have been on 200 mcg selenium every day and still had antibodies at several thousand. Who knows, maybe it would be even high if I wasn't taking selenium at that time. There are a few studies out there that have shown selenium taken with inositol reduces antibodies. I'm not sure if there are positive studies done on selenium by itself.
Your wife's symptoms are mainly caused by FT3 and FT4 that are not at her best level. That will take finding the right dosage of the right medicine. She might not have a good reaction to NDT since she has Hashimoto's and some Hashimoto's patients cannot take it. They take Synthyroid and Cytomel, or generic T4 and T3 instead.
I have Hashimoto's too. I second what Gimmel said about not bothering with an endocrinologist. They will only make her worse if she followed their advice. How about going to an naturopath or someone similar?
I know that 300 TPO sounds high and alarming. If it's any reassurance, the level of antibodies do not exactly always correlate with the severity of symptoms. If they did, then when my TPO has been 20-25 times higher than your wife's, I would not be alive. When my TPO was in the upper half of 5 figures, my TSH was 0.090, FT3 was 4.0, and my FT4 was1.35. I am a thin person with Hashimoto's. Now, when my TSH was very high, my FT3 and FT4 were very low, and I gained 10 lbs until I got my medication sorted. I also do not have the more common low DHEA-s, mine is over range. I'd say on an average my TPO is around 1,500, and that is with me having no hypo symptoms. It's been slightly under 1000 several times, but not for long because something always triggers it to go up to around 1,500 again.This disease definitely effects everyone differently.
Another thing that I can say about selenium (frequently taken with vitamin E because they have a synergistic effect) is that it does not definitely reduce antibodies, at least not in my years of experience in taking it. I have been on 200 mcg selenium every day and still had antibodies at several thousand. Who knows, maybe it would be even high if I wasn't taking selenium at that time. There are a few studies out there that have shown selenium taken with inositol reduces antibodies. I'm not sure if there are positive studies done on selenium by itself.
Your wife's symptoms are mainly caused by FT3 and FT4 that are not at her best level. That will take finding the right dosage of the right medicine. She might not have a good reaction to NDT since she has Hashimoto's and some Hashimoto's patients cannot take it. They take Synthyroid and Cytomel, or generic T4 and T3 instead.
Has she been tested for diabetes and PCOS? Diabetes and PCOS can both accompany hypothyroidism or Hashimoto's. She could have PCOS even if she doesn't have unusual body hair growth. Has she been tested for sleep apnea? Weight gain can cause sleep apnea, or sleep apnea can cause weight gain. Sleep apnea and sleep disturbance deprives the brain of oxygen, and that can cause many of the symptoms you say she has. The fatigue, inability to cope with stress, cognitive dysfunction, depression, anxiety, irritability, mental fog/poor concentration, aches and pains.
Thanks for your info, K9, really appreciate it.
No, I cannot think of anything that occurred then that would have triggered it. Nothing. We've seen the correlation before now, and both of us have searched our minds. Never come up with a single thing. No clue.
She's got diabetes and PCOS. The diabetes appeared in August and we assumed it was caused by the Hashimotos. She's had PCOS her whole life, diagnosed at 14 I believe....may have been 15.....never caused any symptoms except crazy periods her whole life.
The new PCP we have put her on 25mcg 1xday of Levothyroxine for Hashimotos, 1000mg 2xday Metformin for diabetes, 5000u 1xday of D3 since her D was low, 375g 1day of Phentermine for weight loss, and 1000mg 2xday fish oil for slightly elevated triglycerides.
She's been on this new regimen for a week with zero improvement.
No, I cannot think of anything that occurred then that would have triggered it. Nothing. We've seen the correlation before now, and both of us have searched our minds. Never come up with a single thing. No clue.
She's got diabetes and PCOS. The diabetes appeared in August and we assumed it was caused by the Hashimotos. She's had PCOS her whole life, diagnosed at 14 I believe....may have been 15.....never caused any symptoms except crazy periods her whole life.
The new PCP we have put her on 25mcg 1xday of Levothyroxine for Hashimotos, 1000mg 2xday Metformin for diabetes, 5000u 1xday of D3 since her D was low, 375g 1day of Phentermine for weight loss, and 1000mg 2xday fish oil for slightly elevated triglycerides.
She's been on this new regimen for a week with zero improvement.
The saliva cortisol test results do not confirm any concern. So I suggest that you proceed to make sure she gets the additional tests done: Vitamin D, B12, DHEA-S and ferritin. Also have you followed up on one of the doctors I suggested in the PM? I think you can have much more confidence in that doctor.
Your wife needs to continue to increase her thyroid med, with the objective of symptom relief. That will likely require a number of dosage increases to get her FT3 high enough, which is difficult with T4 med only. I suggest that you ask her doctor if he is willing to increase her dosage enough to relieve hypo symptoms without being influenced by resultant TSH levels. Also ask if he is willing to prescribe T3 med if needed to get Free T3 levels into the upper half of its range. If the answer to either is no, then you are wasting your time there. Also ask the doctor about the high estrogen. If the doctor agrees it is too high I understand it can be reduced with very small amounts of a prescription med called Anastrozole.
Your wife needs to continue to increase her thyroid med, with the objective of symptom relief. That will likely require a number of dosage increases to get her FT3 high enough, which is difficult with T4 med only. I suggest that you ask her doctor if he is willing to increase her dosage enough to relieve hypo symptoms without being influenced by resultant TSH levels. Also ask if he is willing to prescribe T3 med if needed to get Free T3 levels into the upper half of its range. If the answer to either is no, then you are wasting your time there. Also ask the doctor about the high estrogen. If the doctor agrees it is too high I understand it can be reduced with very small amounts of a prescription med called Anastrozole.
Hey Gimel, thanks for the reply.
I did call the new PCP two days ago and asked him how long he sees he needs to wait on 25mcg of Levo before he decides to do something else given no change in symptoms.
He did state that the literature says it takes 6 weeks for levels to stabilize (and this is reflected in my googling, so he's not completely wrong, but I know how literature and real-life can differ). So I pressed him for an increase in 2-4 weeks (she's been on it for about 9 days now). He said, "We pulled her labs about 9-10 days ago (two weeks now), so we will probably pull her labs 8 weeks from that time (eta about the middle of April) and see where her levels are at. They are technically normal now, but her normal may not be everyone else's normal, and that's why she's having symptoms. I'm cognizant of that normal means different things to each person. That's why I started her on the thyroid meds, to see if it treats the symptoms." So he's kinda sorta saying what I wanted to hear and kinda not. Very wishy washy. And I don't like the 8 week wait for another 25mcg....
Not the detail you suggested though. I will follow up when I see him next. I think there is an appointment scheduled for like 9 days from now.
I also asked him about the Vitamin D, B12, DHEA-S, and Ferritin. He said, "I prefer to focus on the larger more likely issues, such as the diabetes and the excessive weight. I believe she is suffering from metabolic syndrome and that's a lot of why the Metformin should start helping her. Once we get those under control and get at least some Levo into her, and if then we are still not seeing the differences we would expect, then I will go hunting for the little obscure things that may be causing it." I don't like the response, but that's what he said.
We have an appointment with an OBGYN specialist on Tuesday, March 3rd, to discuss the estrogen dominance.
Of the two people you suggested, the one in Edmond (I think off the top of my head) takes no insurance. So not a good thing for us. I did call and verify and yea, he doesn't. It was like $150.00 to do initial appt plus $200-$300 for blood work....already more than I can really afford or honestly want to spend. The other one, the gal in Midwest/Del City, does take Blue Cross/Blue Shield of Oklahoma, and we have a call into her for an appointment to be scheduled.
As always, appreciate the help and guidance. We are both following what you say pretty damn close to the letter. If only it was easier to find docs worth a crap or that could be questioned as to what they will or won't do before making and waiting for appts to come up......
I did call the new PCP two days ago and asked him how long he sees he needs to wait on 25mcg of Levo before he decides to do something else given no change in symptoms.
He did state that the literature says it takes 6 weeks for levels to stabilize (and this is reflected in my googling, so he's not completely wrong, but I know how literature and real-life can differ). So I pressed him for an increase in 2-4 weeks (she's been on it for about 9 days now). He said, "We pulled her labs about 9-10 days ago (two weeks now), so we will probably pull her labs 8 weeks from that time (eta about the middle of April) and see where her levels are at. They are technically normal now, but her normal may not be everyone else's normal, and that's why she's having symptoms. I'm cognizant of that normal means different things to each person. That's why I started her on the thyroid meds, to see if it treats the symptoms." So he's kinda sorta saying what I wanted to hear and kinda not. Very wishy washy. And I don't like the 8 week wait for another 25mcg....
Not the detail you suggested though. I will follow up when I see him next. I think there is an appointment scheduled for like 9 days from now.
I also asked him about the Vitamin D, B12, DHEA-S, and Ferritin. He said, "I prefer to focus on the larger more likely issues, such as the diabetes and the excessive weight. I believe she is suffering from metabolic syndrome and that's a lot of why the Metformin should start helping her. Once we get those under control and get at least some Levo into her, and if then we are still not seeing the differences we would expect, then I will go hunting for the little obscure things that may be causing it." I don't like the response, but that's what he said.
We have an appointment with an OBGYN specialist on Tuesday, March 3rd, to discuss the estrogen dominance.
Of the two people you suggested, the one in Edmond (I think off the top of my head) takes no insurance. So not a good thing for us. I did call and verify and yea, he doesn't. It was like $150.00 to do initial appt plus $200-$300 for blood work....already more than I can really afford or honestly want to spend. The other one, the gal in Midwest/Del City, does take Blue Cross/Blue Shield of Oklahoma, and we have a call into her for an appointment to be scheduled.
As always, appreciate the help and guidance. We are both following what you say pretty damn close to the letter. If only it was easier to find docs worth a crap or that could be questioned as to what they will or won't do before making and waiting for appts to come up......
Thanks for the update.
I think metabolic syndrome is a label they use for weight issues, rather than focusing on the most important part of that, which is low metabolism related to low Free T3 and Free T4 levels. There is also a need to test for Reverse T3 along with the Free T3 so that the ratio can be determined. If I haven't mentioned it there is a company that makes equipment to test for tendon reflex time, since it is a well known indicator of thyroid status. That company claims that the difference between severe hypothyroidism and euthyroidism after effective treatment averages about 400 calories per day in the Resting Metabolic Rate. That amount of increase in RMR would result in a huge weight loss over time.
The Vitamin D B12 and ferritin also have a significant effect on thyroid and symptoms.
Please let us know if you are able to get her in to see that doctor soon.
I think metabolic syndrome is a label they use for weight issues, rather than focusing on the most important part of that, which is low metabolism related to low Free T3 and Free T4 levels. There is also a need to test for Reverse T3 along with the Free T3 so that the ratio can be determined. If I haven't mentioned it there is a company that makes equipment to test for tendon reflex time, since it is a well known indicator of thyroid status. That company claims that the difference between severe hypothyroidism and euthyroidism after effective treatment averages about 400 calories per day in the Resting Metabolic Rate. That amount of increase in RMR would result in a huge weight loss over time.
The Vitamin D B12 and ferritin also have a significant effect on thyroid and symptoms.
Please let us know if you are able to get her in to see that doctor soon.
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