Hypothyroid
mayabrooks025
Posts: 37 Member
Hi,
I just found out I have hypothyroidism, low t4 and normal tsh. I started levothyroxine today. Does anyone have hypothyroidism? I feel extremely lost and looking for advice on all of this. I appreciate your response.
I just found out I have hypothyroidism, low t4 and normal tsh. I started levothyroxine today. Does anyone have hypothyroidism? I feel extremely lost and looking for advice on all of this. I appreciate your response.
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Replies
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I recommend u check out
Stopthethyriodmadness website. There is a tonnof info there. I started on synthyriod and switched to Armour. Hang n there!3 -
The one thing I commonly find with hypothyroidism is that no two patients - even with very similar panel results - respond exactly the same to identical treatments.
Levothyroxine (Synthroid and other brand-names) is the standard treatment to start with, but for some people it just doesn't work. Keep in mind you may need to test levels and treat for T3 as well.
My advice is work closely with your doctor to determine what treatment works BEST for you. You need to give feedback, and he/she needs to be able to present options. It's not easy to find the best solution for each individual for hypothyroidism - but if both you and your GP work on this together, you can make some good progress on the issues.
Good luck!2 -
Thank you both for your response. I will check out stop the thyroid madness and also talk to my doctor about checking my T3. Thank you again so much!0
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@mayabrooks025
Maria Emmerich of mariamindbodyhealth.com has some good information as well. For me, adding medications alone was not enough. I had to add supplements and eat a more nutrient rich diet in order to start to feel better.
One of the things alone that hypothyroidism does is affect the level of stomach acid produced, which on top of all the normal thyroid stuff makes you have a harder time digesting food and breaking down nutrients to absorb them, which creates a cascading failure in the body.
Additionally, thyroid issues and adrenal issues are kissing cousins, and where you find one, you often find the other, even if you have to dig. Without addressing all ongoing issues, you won't make good progress in any particular category.
My personal suggestion is to read all you can. In fact, I learned just today about some additional more old school therapies I might test drive to see if I like them.1 -
I have been officially diagnosed with hypo as of this past year. Suspected for over 13 years previously. I had every symptom for those13 years, but the docs only ever tested tsh. Finally had a worsening of symptoms last year accompanied by very low blood pressure drops and had a nurse practitioner run a full thyroid panel. My tsh was "only" a 6, but free t4 was at the very bottom of the range and free t3 was lower than range. She still likes to only observe tsh but the frees were very telling to me. As free t3 is the active form of the hormone and every cell in your body has thyroid hormone receptors, it is no wonder I was in such complete system survival mode.
I asked her to start me on dessicated thyroid instead of synthetics. She began with 1/4 of the reccomended starting dose and now I am up to 1.5 grains daily. I have seen many improvements so far! No more passing out, I can walk without looking like I have had a stroke(my body was so tired), I have been building up to workouts again and do so about 3-4 times a week where before I would be trashed for 4-5 days after any exertion. And it is helping the more "minor" symptoms as well. New hair growth, less constipation, warmer, able to recall conversations and details. I feel like my age now instead of someone just attempting to survive.
It is a long road, I am told sometimes it takes work in finding dosages and meds for each individual. Do lots of reading, ask lots of questions, and insist that you are a person and not a number on a lab. I keep reminding my nurse practitioner of this, if they treat other disorders based solely on symptoms, they should work with us and treat the symptoms before the lab numbers too!1 -
Also, optimal range of TSH for most folks is 0.5-1.5. Anything over 2.0 in a verified hypothyroid patient (not Hashimoto's or any other specialty type) is considered to by time to increase medication. Free, Total, and Reverse T4 & T3 numbers, are also major indicators.2
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I appreciate your response so much! I felt so alone and desperately searching online for Information. I appreciate everyone's response and will request more tests. My t3 was not tested only my TSH and t4. Can we please stay in touch. I appreciate you!1
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It took over 2 years with my current endocrinologist - whom I actually like a great deal - both his personality and his professional capacity - before I was able to get my T3 numbers tested, so it isn't a surprise. Personally, I would look to getting a metabolic endocrinologist or functional medicine doctor who handles thyroid, as the majority of thyroid treatments are considered unconventional. You really need someone to look at the big picture, not just this small corner of the puzzle of overall health, if you can afford it. There is a thread, and I'll go look for the link, that has a list of good doctors on it.1
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Here is the link to that thread. http://community.myfitnesspal.com/en/discussion/10478334/online-list-of-low-carb-doctors#latest1
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If you are taking levothyroxine (or synthroid) don't have coffe within 1 hour of taking it or supplements within 4 hours (particularly calcium) as it will decrease absorption. If you are taking biotin, stop it a few days before a TSH draw as it will affect the results. Also, some people find they do better on synthroid or other name brand rather then generic as the fillers in the pills can affect absorption. Best wishes on finding what works for you!1
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Me too. I'm hypothyroid. Probably Hashis since I have a few autoimmune issues.
I agree that reading widely helps. I found Stop the Thyroid Madness to be one of the most useful reads. I was one of those people for whom Synthroid did not help much. PLus I had a doctor that just went by TSH, and since our TSH "normal" range went up to 4.5, that wasn't very helpful. LOL
I gave Synthroid almost a year and switched to natural desiccated thyroid. It really made a difference for me. I recently upped my dose to 180mcg of NDT. It's amazing what a difference having the right dose makes on your energy levels! You'll probably know when you are getting close or have the right meds. T4, T4+T3, or NDT. Whatever works for you.
For tests, I would go with free T4, free T3 and TSH. I've read the frees should be in the 50-75% range of the normal range. For me it is true. If I am in the bottom of normal, I can really feel it. The same goes with being a bit too high - it feels really wrong.
TSH should be near a 1 unless you take T3 or NDT. My TSH is at 0.1 or lower but my frees are pretty perfect so I feel good.2 -
Thank you again everyone for responding I'm getting such good information on here. You all are the best.
Question: I read a list of foods to avoid if you have hypothyroidism. I was really disappointed, no broccoli or cauliflower. Do anyone follow a special diet?0 -
The problem with broccoli or cauliflower I think is that they can block some hormone from being absorbed. I am sure someone knows a bit more about this as we have some very educated people here. This is only a problem if the veggies are raw and only if eaten in huge quantities. I cook mine mostly, but a handful of raw ones to munch with dip are something I enjoy and don't worry about.1
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Thank you so much! I always cook mine so hopefully I can still have it but if I need to cut them out then I will.0
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You aren't alone at all! I understand that feeling though. I have hypothyroidism that I control with Levothyroxine. I got lucky and the first drug I tried worked. I just make sure to take it as early as I can in the morning so there's a good bit of time between it and my first cup of coffee. I don't avoid any foods, but I also don't eat broccoli and cauliflower more than one or two times a week.
Good luck to you!1 -
mayabrooks025 wrote: »Hi,
I just found out I have hypothyroidism, low t4 and normal tsh. I started levothyroxine today. Does anyone have hypothyroidism? I feel extremely lost and looking for advice on all of this. I appreciate your response.
I've been diagnosed with Hashimoto's hypothyroidism (a little over a year). In my experience the hype over hypothyroidsm is vastly overrated.
Do make sure, as others have noted, that your doc is testing your thyroid hormone levels directly: T4, T3, and rT3. TSH is less directly useful, but provides some information. Your TSH, T4, and T3 can be absolutely normal, but if your rT3 is too high you may feel like crud. My doctor calls T3 the happy hormone, and rT3 the sad hormone.
If your rT3 level is too high, your thyroid is not working to convert the T4 (levothyroxine, as a synthetic hormone) into T3 properly, and you may need to add T3 directly (Liothyronine, as a synthetic hormone). I take 75 mcg of levothyroxine and 5 mcg of liothyronine - that seems to be about right, but the blood test I had done this morning will decide if it needs to be adjusted.
As for impact on weight loss - it has had zero impact on mine. I've just lost ~73 lbs (a bit under a year). About the same rate of weight loss as prior efforts at weight loss (aside from the 3 month pause during cancer treatment). I've been maintaining now for ~2 months.
I don't follow a special diet - and have not had any trouble getting my thyroid numbers in teh appropriate range. I have seen suggestions that keto and hypothyroidism have some incompatibility problems - but haven't had time to run it to the ground. My primary focus was to get my diabetes under control (simultaneous dagnosis), then to shift to researching what I need to know about Hashimoto's thyroiditis. Cancer interrupted that - but I'm almost at the point where I can pick that research up. (Fingers crossed for my appointment tomorrow, in part to review symptoms in the other breast.
) 2 -
I just had my TSH done- it came back 2.34. My doc says it's a very reliable test and that this is a normal result, no need to check any further.
Thoughts?0 -
Some people find they do better on synthroid or other name brand rather then generic as the fillers in the pills can affect absorption.
Is there anywhere one can turn to learn about these shadowy fillers?
(For example, do the manufacturers use the same fillers from one med to another? Does the FDA monitor these "inactive ingredients" in any meaningful way ?)
Thanks for any insights!1 -
@ChoiceNotChance - my doctor, as well as all the functional doctors I've been listening to lately all say OPTIMAL range for TSH is 0.5-1.5. If you feel AWESOME at 2.34, it may be okay for you, but if not, I would test further.2
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Some people find they do better on synthroid or other name brand rather then generic as the fillers in the pills can affect absorption.
Is there anywhere one can turn to learn about these shadowy fillers?
(For example, do the manufacturers use the same fillers from one med to another? Does the FDA monitor these "inactive ingredients" in any meaningful way ?)
Thanks for any insights!
Not that I've discovered. Just like I can tell you in the various doses of levo, the pills change color. I've gone from 75 to 88 to 100 to 112 mcg, and the current one is a reddish color, which I'm sure has Red #40, which is a mortal enemy of my gut, but I don't know any other way around it. @RalfLott - I figured if anyone would know about Brands versus generics, it'd be you, given your extensive experience with Metformin/Glucophage.
My understanding is that the inactive ingredients aren't tracked anywhere specific, and it varies WILDLY from manufacturer to manufacturer. In fact, if you get a refill, you might have to ask your pharmacy specifically to keep the same generic manufacturer. Otherwise they use whatever the system autoprompts.1 -
KnitOrMiss wrote: »Some people find they do better on synthroid or other name brand rather then generic as the fillers in the pills can affect absorption.
Is there anywhere one can turn to learn about these shadowy fillers?
(For example, do the manufacturers use the same fillers from one med to another? Does the FDA monitor these "inactive ingredients" in any meaningful way ?)
Thanks for any insights!
Not that I've discovered. Just like I can tell you in the various doses of levo, the pills change color. I've gone from 75 to 88 to 100 to 112 mcg, and the current one is a reddish color, which I'm sure has Red #40, which is a mortal enemy of my gut, but I don't know any other way around it. @RalfLott - I figured if anyone would know about Brands versus generics, it'd be you, given your extensive experience with Metformin/Glucophage.
My understanding is that the inactive ingredients aren't tracked anywhere specific, and it varies WILDLY from manufacturer to manufacturer. In fact, if you get a refill, you might have to ask your pharmacy specifically to keep the same generic manufacturer. Otherwise they use whatever the system autoprompts.
If only... The "other ingredients" in pharmaceuticals remain a mystery to me. I've asked pharmacists, docs, psychics, etc., but no luck so far.
There was a, clinical pharmacologist on one of the Fat Summit features... Maybe that would be the right sort of tree up which to bark..... .
I'm shopping around for a new pharmacy, too, since mine wouldn't oblige with a different metformin generic. ("Oh, you don't like borscht? Come back when it's gone.")1 -
ChoiceNotChance wrote: »I just had my TSH done- it came back 2.34. My doc says it's a very reliable test and that this is a normal result, no need to check any further.
Thoughts?
TSH is the thyroid stimulating hormone. It may be reliable at measuring TSH, but TSH is not a direct measure of thyroid function.3 -
While my pharmacist insists that today's levo formulations are no longer a problem, when my primary care doctor sent me to an endo, she insisted that I should switch to Synthroid. She has major concerns about the generics. My insurance co-pay wasn't too high at the time but she told me about the ability to get discounted Synthyroid through the manufacturer. I didn't check it out at the time but my co-pay is going from $30 to $80/month on January 1st (ouch), so I checked it out the other day. Here's the website: https://www.synthroid.com/ It's called the Before Breakfast Club and eligible individuals will get a special card, which brings their co-pay down to $25/month. The eligibility information is on the website. It's not income-based. You have to have private insurance (not Medicare or Medicaid), your co-pay has to be higher than $25, you need to use a participating pharmacy, etc. They send you a card you use at the pharmacy. I'm waiting to hear back from them.3
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@mayabrooks025
There is a MFP hypo- and hyperthyroidism group. It's not as active as this group but there are some very knowledgeable and helpful group members. Here's the link:
http://community.myfitnesspal.com/en/group/753-hypothyroidism-and-hyperthyroidism2 -
ChoiceNotChance wrote: »I just had my TSH done- it came back 2.34. My doc says it's a very reliable test and that this is a normal result, no need to check any further.
Thoughts?
It's not a great test. I was told I was normal forever because our normal range used to go to 6. Then they lowered it. I had to leave my last doctor because my TSH was finally down to a 2.6 or 2.7 on 150mcg synthroid but my free T3 and free T4 had not budged - I felt no better than when my TSH was 14.
Even now, I knew my thyroid was low because my temp was low. I rarely got much above 97F. I upped my dose of NDT (with my doctor) to 180 mcg NDT and felt better within a few days.KnitOrMiss wrote: »Some people find they do better on synthroid or other name brand rather then generic as the fillers in the pills can affect absorption.
Is there anywhere one can turn to learn about these shadowy fillers?
(For example, do the manufacturers use the same fillers from one med to another? Does the FDA monitor these "inactive ingredients" in any meaningful way ?)
Thanks for any insights!
Not that I've discovered. Just like I can tell you in the various doses of levo, the pills change color. I've gone from 75 to 88 to 100 to 112 mcg, and the current one is a reddish color, which I'm sure has Red #40, which is a mortal enemy of my gut, but I don't know any other way around it. @RalfLott - I figured if anyone would know about Brands versus generics, it'd be you, given your extensive experience with Metformin/Glucophage.
My understanding is that the inactive ingredients aren't tracked anywhere specific, and it varies WILDLY from manufacturer to manufacturer. In fact, if you get a refill, you might have to ask your pharmacy specifically to keep the same generic manufacturer. Otherwise they use whatever the system autoprompts.
Have you thought about combining different doses? Like a 50 + 75? Something like that?
I had to do something like that because I was reacting to one of the synthroids. I can't remember which one. Anyways, I was experiencing lips and mouth swelling, allergic reactions from something in one of the pills. I switched to a couple of lower doses and it stopped.1 -
ChoiceNotChance wrote: »I just had my TSH done- it came back 2.34. My doc says it's a very reliable test and that this is a normal result, no need to check any further.
Thoughts?
It's not a great test. I was told I was normal forever because our normal range used to go to 6. Then they lowered it. I had to leave my last doctor because my TSH was finally down to a 2.6 or 2.7 on 150mcg synthroid but my free T3 and free T4 had not budged - I felt no better than when my TSH was 14.
Even now, I knew my thyroid was low because my temp was low. I rarely got much above 97F. I upped my dose of NDT (with my doctor) to 180 mcg NDT and felt better within a few days.KnitOrMiss wrote: »Some people find they do better on synthroid or other name brand rather then generic as the fillers in the pills can affect absorption.
Is there anywhere one can turn to learn about these shadowy fillers?
(For example, do the manufacturers use the same fillers from one med to another? Does the FDA monitor these "inactive ingredients" in any meaningful way ?)
Thanks for any insights!
Not that I've discovered. Just like I can tell you in the various doses of levo, the pills change color. I've gone from 75 to 88 to 100 to 112 mcg, and the current one is a reddish color, which I'm sure has Red #40, which is a mortal enemy of my gut, but I don't know any other way around it. @RalfLott - I figured if anyone would know about Brands versus generics, it'd be you, given your extensive experience with Metformin/Glucophage.
My understanding is that the inactive ingredients aren't tracked anywhere specific, and it varies WILDLY from manufacturer to manufacturer. In fact, if you get a refill, you might have to ask your pharmacy specifically to keep the same generic manufacturer. Otherwise they use whatever the system autoprompts.
Have you thought about combining different doses? Like a 50 + 75? Something like that?
I had to do something like that because I was reacting to one of the synthroids. I can't remember which one. Anyways, I was experiencing lips and mouth swelling, allergic reactions from something in one of the pills. I switched to a couple of lower doses and it stopped.
@nvmomketo - I haven't combined, but it was random I noticed the color. I'm not having an measurable reactions, so for now I'll just stick with it. My doc gives me 3 months at a time, so without major symptoms, I can't afford to switch ATM...
Yeah, I had one endo tell me at 4.65 that he didn't know why my PCP had bothered to put me on meds, I was barely in range for it, and that until I lost weight, he couldn't help me with my thyroid balance. Fired him after a single appointment. Luckily I have a great one now...and he's the one who said until I got below 2 and stayed there AND was asymptomatic, he wouldn't consider me level, etc.
And I do take a combo, sort of... I take the 112 mcg Levo and 5 mg lio upon waking (4-5 am), 5 mg lio mid morning (10:30 am - 11:30 am - 1-2 hours after breakfast), and 5 mg lio early afternoon (3-4 pm, 2 hours after lunch, however it falls). This spacing seems to work really well, since the lio is a short run, and I was crashing with just two doses at 5 am and 2 pm... We'll see if my T3 numbers are better in April when I go back.
EDITED TO ADD: I've heard of using the NDT for autoimmune related issues, for chronic pain, and stuff like that... What were you using it for here? Are your thyroid issues auto-immune related (as in test verified)? I would have guessed mine were, but I tested negative or uber low on all antibodies tests1 -
KnitOrMiss wrote: »ChoiceNotChance wrote: »I just had my TSH done- it came back 2.34. My doc says it's a very reliable test and that this is a normal result, no need to check any further.
Thoughts?
It's not a great test. I was told I was normal forever because our normal range used to go to 6. Then they lowered it. I had to leave my last doctor because my TSH was finally down to a 2.6 or 2.7 on 150mcg synthroid but my free T3 and free T4 had not budged - I felt no better than when my TSH was 14.
Even now, I knew my thyroid was low because my temp was low. I rarely got much above 97F. I upped my dose of NDT (with my doctor) to 180 mcg NDT and felt better within a few days.KnitOrMiss wrote: »Some people find they do better on synthroid or other name brand rather then generic as the fillers in the pills can affect absorption.
Is there anywhere one can turn to learn about these shadowy fillers?
(For example, do the manufacturers use the same fillers from one med to another? Does the FDA monitor these "inactive ingredients" in any meaningful way ?)
Thanks for any insights!
Not that I've discovered. Just like I can tell you in the various doses of levo, the pills change color. I've gone from 75 to 88 to 100 to 112 mcg, and the current one is a reddish color, which I'm sure has Red #40, which is a mortal enemy of my gut, but I don't know any other way around it. @RalfLott - I figured if anyone would know about Brands versus generics, it'd be you, given your extensive experience with Metformin/Glucophage.
My understanding is that the inactive ingredients aren't tracked anywhere specific, and it varies WILDLY from manufacturer to manufacturer. In fact, if you get a refill, you might have to ask your pharmacy specifically to keep the same generic manufacturer. Otherwise they use whatever the system autoprompts.
Have you thought about combining different doses? Like a 50 + 75? Something like that?
I had to do something like that because I was reacting to one of the synthroids. I can't remember which one. Anyways, I was experiencing lips and mouth swelling, allergic reactions from something in one of the pills. I switched to a couple of lower doses and it stopped.
@nvmomketo - I haven't combined, but it was random I noticed the color. I'm not having an measurable reactions, so for now I'll just stick with it. My doc gives me 3 months at a time, so without major symptoms, I can't afford to switch ATM...
Yeah, I had one endo tell me at 4.65 that he didn't know why my PCP had bothered to put me on meds, I was barely in range for it, and that until I lost weight, he couldn't help me with my thyroid balance. Fired him after a single appointment. Luckily I have a great one now...and he's the one who said until I got below 2 and stayed there AND was asymptomatic, he wouldn't consider me level, etc.
And I do take a combo, sort of... I take the 112 mcg Levo and 5 mg lio upon waking (4-5 am), 5 mg lio mid morning (10:30 am - 11:30 am - 1-2 hours after breakfast), and 5 mg lio early afternoon (3-4 pm, 2 hours after lunch, however it falls). This spacing seems to work really well, since the lio is a short run, and I was crashing with just two doses at 5 am and 2 pm... We'll see if my T3 numbers are better in April when I go back.
EDITED TO ADD: I've heard of using the NDT for autoimmune related issues, for chronic pain, and stuff like that... What were you using it for here? Are your thyroid issues auto-immune related (as in test verified)? I would have guessed mine were, but I tested negative or uber low on all antibodies tests
I'm glad there is no problem with the red.
I started with NDT because synthroid wasn't doing it for me. I really felt no better. Plus it made sense to me. My thyroid wasn't just low on one hormone. If my thyroid was under producing it was under producing everything (T0, T1, etc).
My thyroid issues are not technically verified as hashi's. My last TPO Ab test was a 19 point something and an abnormal reading is 20 or above.... Sort of like how 6 used to be a normal TSH but my numbers dancing around that were not abnormal enough for treatment (and I went along with it since this was back before Dr Google existed LOL). So technically I don't have hashi's, but I do have two other autoimmune diseases(celiac and ITP), and possibly lupus (according to one doctor) but that is serum negative too. It just makes sense that my hypothyroidism, which is pretty strong, would be caused by AI problems. I can't think of any other reason that a thyroid would have started to shut down on someone in their early 20's. By time I finally had it diagnosed, I went to an almost full replacement dose of meds.1 -
KnitOrMiss wrote: »ChoiceNotChance wrote: »I just had my TSH done- it came back 2.34. My doc says it's a very reliable test and that this is a normal result, no need to check any further.
Thoughts?
It's not a great test. I was told I was normal forever because our normal range used to go to 6. Then they lowered it. I had to leave my last doctor because my TSH was finally down to a 2.6 or 2.7 on 150mcg synthroid but my free T3 and free T4 had not budged - I felt no better than when my TSH was 14.
Even now, I knew my thyroid was low because my temp was low. I rarely got much above 97F. I upped my dose of NDT (with my doctor) to 180 mcg NDT and felt better within a few days.KnitOrMiss wrote: »Some people find they do better on synthroid or other name brand rather then generic as the fillers in the pills can affect absorption.
Is there anywhere one can turn to learn about these shadowy fillers?
(For example, do the manufacturers use the same fillers from one med to another? Does the FDA monitor these "inactive ingredients" in any meaningful way ?)
Thanks for any insights!
Not that I've discovered. Just like I can tell you in the various doses of levo, the pills change color. I've gone from 75 to 88 to 100 to 112 mcg, and the current one is a reddish color, which I'm sure has Red #40, which is a mortal enemy of my gut, but I don't know any other way around it. @RalfLott - I figured if anyone would know about Brands versus generics, it'd be you, given your extensive experience with Metformin/Glucophage.
My understanding is that the inactive ingredients aren't tracked anywhere specific, and it varies WILDLY from manufacturer to manufacturer. In fact, if you get a refill, you might have to ask your pharmacy specifically to keep the same generic manufacturer. Otherwise they use whatever the system autoprompts.
Have you thought about combining different doses? Like a 50 + 75? Something like that?
I had to do something like that because I was reacting to one of the synthroids. I can't remember which one. Anyways, I was experiencing lips and mouth swelling, allergic reactions from something in one of the pills. I switched to a couple of lower doses and it stopped.
@nvmomketo - I haven't combined, but it was random I noticed the color. I'm not having an measurable reactions, so for now I'll just stick with it. My doc gives me 3 months at a time, so without major symptoms, I can't afford to switch ATM...
Yeah, I had one endo tell me at 4.65 that he didn't know why my PCP had bothered to put me on meds, I was barely in range for it, and that until I lost weight, he couldn't help me with my thyroid balance. Fired him after a single appointment. Luckily I have a great one now...and he's the one who said until I got below 2 and stayed there AND was asymptomatic, he wouldn't consider me level, etc.
And I do take a combo, sort of... I take the 112 mcg Levo and 5 mg lio upon waking (4-5 am), 5 mg lio mid morning (10:30 am - 11:30 am - 1-2 hours after breakfast), and 5 mg lio early afternoon (3-4 pm, 2 hours after lunch, however it falls). This spacing seems to work really well, since the lio is a short run, and I was crashing with just two doses at 5 am and 2 pm... We'll see if my T3 numbers are better in April when I go back.
EDITED TO ADD: I've heard of using the NDT for autoimmune related issues, for chronic pain, and stuff like that... What were you using it for here? Are your thyroid issues auto-immune related (as in test verified)? I would have guessed mine were, but I tested negative or uber low on all antibodies tests
I'm glad there is no problem with the red.
I started with NDT because synthroid wasn't doing it for me. I really felt no better. Plus it made sense to me. My thyroid wasn't just low on one hormone. If my thyroid was under producing it was under producing everything (T0, T1, etc).
My thyroid issues are not technically verified as hashi's. My last TPO Ab test was a 19 point something and an abnormal reading is 20 or above.... Sort of like how 6 used to be a normal TSH but my numbers dancing around that were not abnormal enough for treatment (and I went along with it since this was back before Dr Google existed LOL). So technically I don't have hashi's, but I do have two other autoimmune diseases(celiac and ITP), and possibly lupus (according to one doctor) but that is serum negative too. It just makes sense that my hypothyroidism, which is pretty strong, would be caused by AI problems. I can't think of any other reason that a thyroid would have started to shut down on someone in their early 20's. By time I finally had it diagnosed, I went to an almost full replacement dose of meds.
@nvmomketo - you know it's interesting that you say that about the lupus. My PCP has been CONVINCED for years now that I have it, and has tested me for the antibodies or whatever 2-3 times this past decade. It doesn't make sense with what I know of it or anything, but you never can tell.
My thyroid tests were ....
Anti-Thyroglobulin Antibody
Date Result Ref Range Flag
31-May-16 <1 IU/mL < or = 1 IU/mL
Thyroid Peroxidase Antibodies
Date Result Ref Range Flag
31-May-16 1 IU/mL <9 IU/mL
(Guess this one she used as the lupus screening alongside my CMP)
Anti-Nuclear Antibody Screen
Date Result Ref Range Flag
14-Oct-15 NEGATIVE NEGATIVE
21-Apr-15 POSITIVE NEGATIVE H
24-Nov-10 NEGATIVE NEGATIVE
Anti-Nuclear Antibody Pattern
Date Result Ref Range Flag
21-Apr-15 NUCLEOLAR () H
Anti-Nuclear Antibody Titer
Date Result Ref Range Flag
21-Apr-15 1:80 titer SEE COMMENT H
(And RA)...
Rheumatoid Factor
Date Result Ref Range Flag
21-Apr-15
IU/mL <14
24-Nov-10 6 IU/mL <14
So as far as I know, I don't have anything autoimmune, and so I don't know if the LDN would do anything for me or not, despite chronic pain... With meds, I start to feel better, and then I just don't... Right now, I'm holding steady, but this weather is doing me in...
I can't recall, did we discuss taking l-tyrosine with your meds? It seems to make a difference for me... So much trial and error, it's such a headache.1 -
This thread is amazing! I'm learning so much just reading it. So awesome that we can connect and help each other through this process while we work on our health goals. Thank you again everyone. 1
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KnitOrMiss wrote: »KnitOrMiss wrote: »ChoiceNotChance wrote: »I just had my TSH done- it came back 2.34. My doc says it's a very reliable test and that this is a normal result, no need to check any further.
Thoughts?
It's not a great test. I was told I was normal forever because our normal range used to go to 6. Then they lowered it. I had to leave my last doctor because my TSH was finally down to a 2.6 or 2.7 on 150mcg synthroid but my free T3 and free T4 had not budged - I felt no better than when my TSH was 14.
Even now, I knew my thyroid was low because my temp was low. I rarely got much above 97F. I upped my dose of NDT (with my doctor) to 180 mcg NDT and felt better within a few days.KnitOrMiss wrote: »Some people find they do better on synthroid or other name brand rather then generic as the fillers in the pills can affect absorption.
Is there anywhere one can turn to learn about these shadowy fillers?
(For example, do the manufacturers use the same fillers from one med to another? Does the FDA monitor these "inactive ingredients" in any meaningful way ?)
Thanks for any insights!
Not that I've discovered. Just like I can tell you in the various doses of levo, the pills change color. I've gone from 75 to 88 to 100 to 112 mcg, and the current one is a reddish color, which I'm sure has Red #40, which is a mortal enemy of my gut, but I don't know any other way around it. @RalfLott - I figured if anyone would know about Brands versus generics, it'd be you, given your extensive experience with Metformin/Glucophage.
My understanding is that the inactive ingredients aren't tracked anywhere specific, and it varies WILDLY from manufacturer to manufacturer. In fact, if you get a refill, you might have to ask your pharmacy specifically to keep the same generic manufacturer. Otherwise they use whatever the system autoprompts.
Have you thought about combining different doses? Like a 50 + 75? Something like that?
I had to do something like that because I was reacting to one of the synthroids. I can't remember which one. Anyways, I was experiencing lips and mouth swelling, allergic reactions from something in one of the pills. I switched to a couple of lower doses and it stopped.
@nvmomketo - I haven't combined, but it was random I noticed the color. I'm not having an measurable reactions, so for now I'll just stick with it. My doc gives me 3 months at a time, so without major symptoms, I can't afford to switch ATM...
Yeah, I had one endo tell me at 4.65 that he didn't know why my PCP had bothered to put me on meds, I was barely in range for it, and that until I lost weight, he couldn't help me with my thyroid balance. Fired him after a single appointment. Luckily I have a great one now...and he's the one who said until I got below 2 and stayed there AND was asymptomatic, he wouldn't consider me level, etc.
And I do take a combo, sort of... I take the 112 mcg Levo and 5 mg lio upon waking (4-5 am), 5 mg lio mid morning (10:30 am - 11:30 am - 1-2 hours after breakfast), and 5 mg lio early afternoon (3-4 pm, 2 hours after lunch, however it falls). This spacing seems to work really well, since the lio is a short run, and I was crashing with just two doses at 5 am and 2 pm... We'll see if my T3 numbers are better in April when I go back.
EDITED TO ADD: I've heard of using the NDT for autoimmune related issues, for chronic pain, and stuff like that... What were you using it for here? Are your thyroid issues auto-immune related (as in test verified)? I would have guessed mine were, but I tested negative or uber low on all antibodies tests
I'm glad there is no problem with the red.
I started with NDT because synthroid wasn't doing it for me. I really felt no better. Plus it made sense to me. My thyroid wasn't just low on one hormone. If my thyroid was under producing it was under producing everything (T0, T1, etc).
My thyroid issues are not technically verified as hashi's. My last TPO Ab test was a 19 point something and an abnormal reading is 20 or above.... Sort of like how 6 used to be a normal TSH but my numbers dancing around that were not abnormal enough for treatment (and I went along with it since this was back before Dr Google existed LOL). So technically I don't have hashi's, but I do have two other autoimmune diseases(celiac and ITP), and possibly lupus (according to one doctor) but that is serum negative too. It just makes sense that my hypothyroidism, which is pretty strong, would be caused by AI problems. I can't think of any other reason that a thyroid would have started to shut down on someone in their early 20's. By time I finally had it diagnosed, I went to an almost full replacement dose of meds.
@nvmomketo - you know it's interesting that you say that about the lupus. My PCP has been CONVINCED for years now that I have it, and has tested me for the antibodies or whatever 2-3 times this past decade. It doesn't make sense with what I know of it or anything, but you never can tell.
My thyroid tests were ....
Anti-Thyroglobulin Antibody
Date Result Ref Range Flag
31-May-16 <1 IU/mL < or = 1 IU/mL
Thyroid Peroxidase Antibodies
Date Result Ref Range Flag
31-May-16 1 IU/mL <9 IU/mL
(Guess this one she used as the lupus screening alongside my CMP)
Anti-Nuclear Antibody Screen
Date Result Ref Range Flag
14-Oct-15 NEGATIVE NEGATIVE
21-Apr-15 POSITIVE NEGATIVE H
24-Nov-10 NEGATIVE NEGATIVE
Anti-Nuclear Antibody Pattern
Date Result Ref Range Flag
21-Apr-15 NUCLEOLAR () H
Anti-Nuclear Antibody Titer
Date Result Ref Range Flag
21-Apr-15 1:80 titer SEE COMMENT H
(And RA)...
Rheumatoid Factor
Date Result Ref Range Flag
21-Apr-15 IU/mL <14
24-Nov-10 6 IU/mL <14
So as far as I know, I don't have anything autoimmune, and so I don't know if the LDN would do anything for me or not, despite chronic pain... With meds, I start to feel better, and then I just don't... Right now, I'm holding steady, but this weather is doing me in...
I can't recall, did we discuss taking l-tyrosine with your meds? It seems to make a difference for me... So much trial and error, it's such a headache.
@KnitOrMiss Lupus is another one of those diseases that can imitate other AI diseases. I think that must be what happened with me. You know that diagnostic criteria for lupus? I have a malar (like) rash (possibly roseacea) which gets worse in sun or strong artificial light, low platelets (ITP), positive ANA sometimes (often during a flare-up), mouth sores and arthritis. Supposedly you need 4 of the 11 criteria to be diagnosed. I have 4 or 5 but they may have been caused by other things like my celiac, hashi's or ITP (which is low platelets). Staying gluten free and treating the hypothyroidism really helps with most of it so I just let it go.
Did your PCP run the more specific tests for lupus if he suspects it? https://www.hopkinslupus.org/lupus-tests/lupus-blood-tests/ ANA is one of the least specific to lupus. Hashis can sometimes cause it. A nucleolar pattern is often associated with schleroderma but a 1:80 is pretty low and often considered negative. It could be one of those flukes or due to hashi's. Mine always shows up speckled at 1:80 or 1:160. (The numbers double every time, and 1:320 is a sure sign your immune system is ...wonky.)
Anyways, I was negative in all the other tests so the rheumy sent me home. Hopefully he is right. Lupus makes hashi's look easy. And we know it isn't.
I took L-tyrosine for a while but I stopped quite a while back. I didn't notice any difference. For me, it mostly comes down to the right dose of natural desiccated thyroid. The other supplements don't seem to do much. They may help but it feels like trying to fill a bath tub with an eye dropper - It may make a difference in the long run, but I'm not that patient. LOL1
