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jimana
@jimana

Posts: 28
Joined: May 10, 2016

Low/High TSH Levels, and Impact on Other Conditions?

Posted by @jimana, Mar 18, 2017

@colleenyoung Coleen, it’s been a while since I participated in a discussion, last year when I first had A-fib and stayed active for a while. Recently it’s come to light that when my A-fib events happen, my thyroid TSH hormone has been very low and it seems that it may be the trigger. The reason for this contact is to learn if there is any discussion of thyroid issues. I asked my doctor to switch me from Synthroid to Nature-Throid, a natural product instead of synthetic, last June. Since then my TSH numbers have been all over the map. It first came back very high, meaning I needed more Nature-Throid. We increased and tested, increased and tested until my meds were high and the TSH was very low (0.03) at my last A-Fib event when it should be 0.6 – 3.74. Since then we have decreased the meds but the TSH stays low, recently at 0.06. Just wondered if any other members had any experience in this arena. Thanks, Jim

REPLY

Hi @jimana,

You’ll notice that I put your message in the Diabetes/Endocrine group, where there are many active conversations about thyroid issues.

@wdd18054 @upartist @upnorthnancy @jmbjar @michellecrcrn @popolopo @cahnny @taterjoy @michellecrcrn @katemn @lynnkay1956 @akogut @cherriann @taterjoy @katemn @joidevie have talked about various thyroid problems, and I sincerely hope they will return to share their experiences.

I’d like to tag @chancery too, who has posted about Nature-Throid in a past discussion: http://mayocl.in/2nqyZJV
You may also wish to view this discussion: “Can you have a combination of hypo and hyper thyroid problems?”
http://mayocl.in/2nIrKdJ

@jimana, what other symptoms do you have, that may be linked to low TSH?

Dear @jimana .. I know zero about “switch me from Synthroid to Nature-Throid, a natural product instead of synthetic” but when I was diagnosed with a serious lung disease (MAC) my TSH varied .. PLUS my TSH has been all over the map over the years .. I have been on Synthroid from 88mg to 125mg daily!
So in case it might help you .. I have copied from my File Cabinet the below info .. hope it does a bit of good! Katherine

THYROID-HYPOTHYROID
I can only speak to the Synthroid portion. I have been on Synthroid since my 40’s and made the BIG mistake of allowing my Internist to test and prescribe my Synthroid. BIG mistake. My TSH has been all over the map over the years .. I have been on Synthroid from 88mg to 125mg daily!

I have since learned that thyroid tests/levels can absolutely look “normal” and you can have all kinds of symptoms. I finally had the smarts to seek out an Endocrinologist at a teaching hospital who was MUCH more well versed in the nuances of Hypothyroidism .. I am now on not only Synthroid but also Cytomel (which is T3 daily). It has made a difference. If you are not currently seeing a good Endocrinologist .. that would be my first step if I was you. Wish I had done that long ago.

@katemn

Dear @jimana .. I know zero about “switch me from Synthroid to Nature-Throid, a natural product instead of synthetic” but when I was diagnosed with a serious lung disease (MAC) my TSH varied .. PLUS my TSH has been all over the map over the years .. I have been on Synthroid from 88mg to 125mg daily!
So in case it might help you .. I have copied from my File Cabinet the below info .. hope it does a bit of good! Katherine

THYROID-HYPOTHYROID
I can only speak to the Synthroid portion. I have been on Synthroid since my 40’s and made the BIG mistake of allowing my Internist to test and prescribe my Synthroid. BIG mistake. My TSH has been all over the map over the years .. I have been on Synthroid from 88mg to 125mg daily!

I have since learned that thyroid tests/levels can absolutely look “normal” and you can have all kinds of symptoms. I finally had the smarts to seek out an Endocrinologist at a teaching hospital who was MUCH more well versed in the nuances of Hypothyroidism .. I am now on not only Synthroid but also Cytomel (which is T3 daily). It has made a difference. If you are not currently seeing a good Endocrinologist .. that would be my first step if I was you. Wish I had done that long ago.

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@katemn Thank you so much for your input. I believe your suggestion about the Endocrinologist is the very best thing I can do right now. I’ve done a lot or reading on thyroid physiology lately but still have no definitive answer. Interesting thing though, I was found in a basal metabolism test in 1957 to have very low metabolism and they gave be a small bottle of Armour thyroid (natural, desiccated, porcine). I took the 30 pills and never did another thing (never went to a doctor) for 33 years until 1990. As far as I can tell no harm was done by doing without meds. Then I had a blood test and they put me on Synthroid and it’s been fine until my change to Nature-Throid. The point of that long story is this: if I could go 33 years without any thyroid meds and do fine, just how important can it be to jump through all kinds of hoops to make sure the numbers are where the statistical averages say they ought to be. I’m 80 years old, healthy as a horse except for infrequent A-fib and have so much energy I’m bouncing off the walls and feel better than I did when I was 40. Go figure.

@kanaazpereira

Hi @jimana,

You’ll notice that I put your message in the Diabetes/Endocrine group, where there are many active conversations about thyroid issues.

@wdd18054 @upartist @upnorthnancy @jmbjar @michellecrcrn @popolopo @cahnny @taterjoy @michellecrcrn @katemn @lynnkay1956 @akogut @cherriann @taterjoy @katemn @joidevie have talked about various thyroid problems, and I sincerely hope they will return to share their experiences.

I’d like to tag @chancery too, who has posted about Nature-Throid in a past discussion: http://mayocl.in/2nqyZJV
You may also wish to view this discussion: “Can you have a combination of hypo and hyper thyroid problems?”
http://mayocl.in/2nIrKdJ

@jimana, what other symptoms do you have, that may be linked to low TSH?

Jump to this post

Thanks, @kanaazpereira . Aside from some hair loss, dry skin, brittle nails and a difficult time keeping my weight where I would like it, I know of no symptoms. The occasional A-Fib (which began when my thyroid numbers were just fine but now may be triggered by them when they are out of whack), may be a symptom, and I definitely will do anything to avoid it.

I would agree with katemn, to see an endocrinologist. Please know that all endocrinologists are not as interested or versed in hypothyroidism, and/or are not as good at “considering” patients’ symptoms. The one I visited in NC was terrific, patient-centered, knowledgeable about and interested in hashimotos type hypothyroidism, and up to date on research. The endocrinologist I have now (mandated by my insurance plan which does not let me choose another) appears to be very uninterested in thyroid issues, and is not very good with patients. My TSH is not so high, but at a “2” (range .5-3.5 at my lab is “normal) I am extremely symptomatic but this Endo will not increase the dose of Synthroid and has not mentioned trying something else. I have read that the natural thyroid hormones are harder to titrate and control than Synthroid, which means levels must be checked more frequently if you have a history of arrhythmias. If you can find patient ratings of your local or regional Endocrinologists, you may increase the odds that the one you ultimately visit will be respected & recommended by patients with hypothyroidism issues. Good luck! Glad you are feeling great at the age of 80!

@katemn

Dear @jimana .. I know zero about “switch me from Synthroid to Nature-Throid, a natural product instead of synthetic” but when I was diagnosed with a serious lung disease (MAC) my TSH varied .. PLUS my TSH has been all over the map over the years .. I have been on Synthroid from 88mg to 125mg daily!
So in case it might help you .. I have copied from my File Cabinet the below info .. hope it does a bit of good! Katherine

THYROID-HYPOTHYROID
I can only speak to the Synthroid portion. I have been on Synthroid since my 40’s and made the BIG mistake of allowing my Internist to test and prescribe my Synthroid. BIG mistake. My TSH has been all over the map over the years .. I have been on Synthroid from 88mg to 125mg daily!

I have since learned that thyroid tests/levels can absolutely look “normal” and you can have all kinds of symptoms. I finally had the smarts to seek out an Endocrinologist at a teaching hospital who was MUCH more well versed in the nuances of Hypothyroidism .. I am now on not only Synthroid but also Cytomel (which is T3 daily). It has made a difference. If you are not currently seeing a good Endocrinologist .. that would be my first step if I was you. Wish I had done that long ago.

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@jimana, I might also add that my husband has Afib so I have done a bit of reading about it .. it is nothing to fool around with .. REALLY increases your risk of heart issues! Have you had it checked out? My husband has an excellent Cardiologist who put him on Eliquis 2.5mg-2x day due to the heart issue risks. Just a thought. Katherine

@taterjoy

I would agree with katemn, to see an endocrinologist. Please know that all endocrinologists are not as interested or versed in hypothyroidism, and/or are not as good at “considering” patients’ symptoms. The one I visited in NC was terrific, patient-centered, knowledgeable about and interested in hashimotos type hypothyroidism, and up to date on research. The endocrinologist I have now (mandated by my insurance plan which does not let me choose another) appears to be very uninterested in thyroid issues, and is not very good with patients. My TSH is not so high, but at a “2” (range .5-3.5 at my lab is “normal) I am extremely symptomatic but this Endo will not increase the dose of Synthroid and has not mentioned trying something else. I have read that the natural thyroid hormones are harder to titrate and control than Synthroid, which means levels must be checked more frequently if you have a history of arrhythmias. If you can find patient ratings of your local or regional Endocrinologists, you may increase the odds that the one you ultimately visit will be respected & recommended by patients with hypothyroidism issues. Good luck! Glad you are feeling great at the age of 80!

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Good advice. Thanks.

@katemn

Dear @jimana .. I know zero about “switch me from Synthroid to Nature-Throid, a natural product instead of synthetic” but when I was diagnosed with a serious lung disease (MAC) my TSH varied .. PLUS my TSH has been all over the map over the years .. I have been on Synthroid from 88mg to 125mg daily!
So in case it might help you .. I have copied from my File Cabinet the below info .. hope it does a bit of good! Katherine

THYROID-HYPOTHYROID
I can only speak to the Synthroid portion. I have been on Synthroid since my 40’s and made the BIG mistake of allowing my Internist to test and prescribe my Synthroid. BIG mistake. My TSH has been all over the map over the years .. I have been on Synthroid from 88mg to 125mg daily!

I have since learned that thyroid tests/levels can absolutely look “normal” and you can have all kinds of symptoms. I finally had the smarts to seek out an Endocrinologist at a teaching hospital who was MUCH more well versed in the nuances of Hypothyroidism .. I am now on not only Synthroid but also Cytomel (which is T3 daily). It has made a difference. If you are not currently seeing a good Endocrinologist .. that would be my first step if I was you. Wish I had done that long ago.

Jump to this post

Thanks, Katherine. Yes, I have been checked out. I was in the ER on Dec 7 with serious A-Fib and my Flecianide was increased because of that event. And the electrocardiologist said I need to be on a blood thinner so I am on 2.5 MG Eliquis. Ironically, my wife and I wound up in the same ER, both for A-Fib on the SAME DAY.

@katemn

Dear @jimana .. I know zero about “switch me from Synthroid to Nature-Throid, a natural product instead of synthetic” but when I was diagnosed with a serious lung disease (MAC) my TSH varied .. PLUS my TSH has been all over the map over the years .. I have been on Synthroid from 88mg to 125mg daily!
So in case it might help you .. I have copied from my File Cabinet the below info .. hope it does a bit of good! Katherine

THYROID-HYPOTHYROID
I can only speak to the Synthroid portion. I have been on Synthroid since my 40’s and made the BIG mistake of allowing my Internist to test and prescribe my Synthroid. BIG mistake. My TSH has been all over the map over the years .. I have been on Synthroid from 88mg to 125mg daily!

I have since learned that thyroid tests/levels can absolutely look “normal” and you can have all kinds of symptoms. I finally had the smarts to seek out an Endocrinologist at a teaching hospital who was MUCH more well versed in the nuances of Hypothyroidism .. I am now on not only Synthroid but also Cytomel (which is T3 daily). It has made a difference. If you are not currently seeing a good Endocrinologist .. that would be my first step if I was you. Wish I had done that long ago.

Jump to this post

@jimana, WOW! Attitude of gratitude! At least I don’t have Afib! Perhaps other things .. but so far I can count that one out! That must have been scary! Katherine

For a number of years I took generic brand thyroid meds and numbers were up and down. After reading that generic meds (though doctors and pharmacists often disagree) can vary enough to alter numbers, I asked my doctor to put me on a name brand drug. After taking name brand for over 8 years, my numbers have stayed stable and I haven’t needed a dosage change. I also want to add that I feel so much better over-all healthwise since changing to name brand. This probably isn’t the answer for everyone, but it made a “huge” difference for me when I changed to name brand (synthroid).

@cherriann

For a number of years I took generic brand thyroid meds and numbers were up and down. After reading that generic meds (though doctors and pharmacists often disagree) can vary enough to alter numbers, I asked my doctor to put me on a name brand drug. After taking name brand for over 8 years, my numbers have stayed stable and I haven’t needed a dosage change. I also want to add that I feel so much better over-all healthwise since changing to name brand. This probably isn’t the answer for everyone, but it made a “huge” difference for me when I changed to name brand (synthroid).

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@cherriann, I ABSOLUTELY agree! I was told years ago that generic brands are not as carefully “checked” .. that any doctor I dealt with should always specify the brand name Synthroid. I have always been careful about that. Thanks for pointing that out! Katherine

@cherriann

For a number of years I took generic brand thyroid meds and numbers were up and down. After reading that generic meds (though doctors and pharmacists often disagree) can vary enough to alter numbers, I asked my doctor to put me on a name brand drug. After taking name brand for over 8 years, my numbers have stayed stable and I haven’t needed a dosage change. I also want to add that I feel so much better over-all healthwise since changing to name brand. This probably isn’t the answer for everyone, but it made a “huge” difference for me when I changed to name brand (synthroid).

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@cherriann @cherriann @katemn I’ve heard the same thing about generic drugs. Being a natural born cheapskate I will usually opt for generic. However when it comes to thyroid I have never had a generic but have been either on Armour, Synthroid or Nature-Throid, all of which are old, established brand name drugs. From time to time I will add an iodine supplement to my regimen, and because it is crucial to the thyroid gland, I may be forcing the numbers up and down with my throid trying to figure out what I’m doing. If anyone has any experience with iodine supplementation and its affect on T4, T3 of TSH I’d like very much to hear it. Thanks guys.

Many who are on dessicated need t3 also. I’m on Levo so still learning myself all this thyroid stuff. I’ve also cut out processed foods, dairy and gluten. Ugh. What a headache. Lol!!! There’s many different issues ranging from person to person as far as diet, activity, age, thyroid treatment, supplementation, etc. if you are deficient in vitamin D, that can cause symptoms related to thyroid. Same with hormones. Magnesium, selenium and vitamin D in my opinion are very important for us thyroid peeps. I buy NOW brand and take 10,000IU’s daily. I a
Do take K2 with it as it helps to absorb. Check out thyroid healing journey on Facebook – it’s a private group and if you post there, they may be able to give you more info. I’ve learned so much and feel so much better since taking vitamin D!! I do suffer Hashimotos and my understanding is that hashis will and can alternate up and down. Have you had antibodies tested??? If you have elevated antibodies, the first step is to reduce and that is by diet modification and supplementation.

You don’t have to see an endocrinologist either. There are integrative drs and functional med drs that treat. My Dr is integrative and much more up to date on thyroid than the endo my daughter and I saw.

@michellecrcrn

Many who are on dessicated need t3 also. I’m on Levo so still learning myself all this thyroid stuff. I’ve also cut out processed foods, dairy and gluten. Ugh. What a headache. Lol!!! There’s many different issues ranging from person to person as far as diet, activity, age, thyroid treatment, supplementation, etc. if you are deficient in vitamin D, that can cause symptoms related to thyroid. Same with hormones. Magnesium, selenium and vitamin D in my opinion are very important for us thyroid peeps. I buy NOW brand and take 10,000IU’s daily. I a
Do take K2 with it as it helps to absorb. Check out thyroid healing journey on Facebook – it’s a private group and if you post there, they may be able to give you more info. I’ve learned so much and feel so much better since taking vitamin D!! I do suffer Hashimotos and my understanding is that hashis will and can alternate up and down. Have you had antibodies tested??? If you have elevated antibodies, the first step is to reduce and that is by diet modification and supplementation.

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I too, have Hashimoto type thyroid disease Michelle, and take D3 every day. However, I started taking the D3 more recently when I was diagnosed with osteoporosis. Thyroid had been well-managed prior to osteoporosis diagnosis by taking name brand meds – but perhaps the addition of D3 has also added a benefit for my thyroid health! Anyway, I started feeling best I had in many years after changing to name brand med, and thankful I haven’t needed additional drugs to feel well and keep my levels good.

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