Thyroid symptoms: hypothyroid, Hashimoto's

[Nada678]

Hello    I wondered if anyone could advise me whether it's bad to start taking Levothyroxine (in UK), whilst suffering badly from Paxil withdrawal.  Could the withdrawal be causing the thyroid issue?  I started on 25 Levo and had terrible insomnia and hair loss.  Would it be safe to wait until I am more stable to take the Levothyroxine?   Or could my TSH of 10.5 be worsening my Paxil withdrawal?

 

I am just wary of taking other drugs whilst withdrawing as my nervous system is so sensitive.

 

Thank you

 

Nada

[freespirit]

Frogie,

 

I'm on Synthroid, and had the same experience as you around sleepiness after taking it and into the afternoon. I did some research and found there were a couple of studies, as well as some anecdotal reports of people feeling better by taking it in the evening, before bed. So I started taking it then. I was sleeping better and not feeling drowsy in the daytime. It also made a difference in reducing muscle and joint pain, probably because of better absorption at night. These studies were done using thyroid meds, not on the natural one you're using. However, it would seem to make sense that the same would hold true about improved absorption. Almost all docs and pharmacists recommend AM dosing and have never heard of these studies.

https://www.verywell.com/should-i-take-my-thyroid-medication-at-night-3233260

 

Edited January 30, 2018 by freespirit
forgot to add article to post

[Frogie]

1 minute ago, Nada678 said:

Hello    I wondered if anyone could advise me whether it's bad to start taking Levothyroxine (in UK), whilst suffering badly from Paxil withdrawal.  Could the withdrawal be causing the thyroid issue?  I started on 25 Levo and had terrible insomnia and hair loss.  Would it be safe to wait until I am more stable to take the Levothyroxine?   Or could my TSH of 10.5 be worsening my Paxil withdrawal?

 

I am just wary of taking other drugs whilst withdrawing as my nervous system is so sensitive.

 

Thank you

 

Nada

I wish I could help you. But Karma is excellent. She will answer you. My TSH was 7.3 and my dr just started me on Armour thyroid last week. I haven't had any symptoms except I'm extremely tired 30-60 minutes after I take my dose. I fought my dr for almost a year, saying it was from tapering, but unfortunately, it just kept going up in numbers.

 

I wish you luck.

 

Take care,

Frogie xx

[Frogie]

2 minutes ago, freespirit said:

Frogie,

 

I'm on Synthroid, and had the same experience as you around sleepiness after taking it and into the afternoon. I did some research and found there were a couple of studies, as well as some anecdotal reports of people feeling better by taking it in the evening, before bed. So I started taking it then. I was sleeping better and not feeling drowsy in the daytime. It also made a difference in reducing muscle and joint pain, probably because of better absorption at night. These studies were done using thyroid meds, not on the natural one you're using. However, it would seem to make sense that the same would hold true about improved absorption. Almost all docs and pharmacists recommend AM dosing and have never heard of these studies.

Thanks freespirit:

 

I appreciate the information. I talked to my dr and he said not to take it at night for some reason. 

 

May I ask how you are doing? Is your TSH because of WD? I've read articles that it can be because if WD.

 

I hope that's what mine is and I can go off when I'm off my meds.

 

Take care,

Frogie xx

[freespirit]

My TSH started going up while I was on AD, well before I started tapering. I was tested and supposedly don't have Hashimoto's--though I've read the results of those tests can be questionable. I've been doing better since I started taking it in the evening. Personally, I'd take the above article in and ask the doctor specifically why you shouldn't take it at night. I think some people find it stimulating, so maybe that's why they'd think the evening wouldn't be the best time. My TSH has been very consistent for a long time, but I still didn't feel my thyroid was adequately treated. But it's also hard to know what are thyroid symptoms and what is WD. I've also worked with a naturopath and sometimes taken homeopathy, especially during the winter. The naturopath believes the tests are of limited value, since they show what the blood levels are, but not what is actually happening in the cells.

[Karma]

Frogie, usually if one starts to have issues like this it is revealing another problem. Is your iron optimized? What about vitamin B, in particular B12. It is difficult to check cortisol while on anti depressants because they affect cortisol, but if you have too high or too low cortisol it can cause this kind of reaction.

 

Here is a link to STTM that provides some explanation about this:  https://stopthethyroidmadness.com/ndt-doesnt-work-for-me/

 

You should probably call your doctor about the drowsiness.

 

Here is a patient advocate site for thyroid: Natural Thyroid Hormones International Yahoo group  My only caution is while they really know thyroid, they don’t know antidepressant withdrawal.

 

Nada, please see the stopthethyroidmadness link above I provided in this email. Your experience with levothyroxine is classic. Applying thyroid is revealing other health issues. I am a big believer in natural desiccated thyroid, but the problem with the UK is it is difficult to get NDT or even T3. There is a UK thyroid group you may find helpful:  tpa-uk.org.uk created by Sheila.  Sheila has been a tireless advocate for people with hypothyroid. Based on your system already showing it is sensitive don’t let them tell you to rapidly make any changes.

 

It is possible withdrawal is causing the thyroid issue. You can treat thyroid while in withdrawal, but you need to make only one change at a time. You need to check iron and other nutrients to ensure they are in a good place and then you can very slowly add thyroid hormones. I always recommend you track and rate your symptoms daily so you can tell whether you are improving, stable or getting worse. 

 

I started thyroid while taking somewhere between 375mg and 300 mg Effexor, 1 mg Xanax and 200 mg gabapentin. I have been tapering for many years and have been able to optimize my thyroid treatment during the taper. But you have to be patient and really listen to your body.

 

Hope something here is helpful,

Love and light,

Karma

[Frogie]

Thanks Karma:

 

My iron is fine, that was just checked. I can't take B Vitamins, they send me to the moon and back, especially while I'm tapering. They always have.

 

It says on the bottle, "May cause drowsiness ", but everything I take says that. So maybe it's a combination of everything.

 

I will call the dr and ask him.

 

Thanks again for all your help. It's really appreciated.

 

Take care,

Frogie xx

[Frogie]

QUESTION 

 

Can anyone tell me if you developed hypothyroidism while on SSRI's/SSNR's?

 

I'm just wondering if they have something to do with it.

 

My thyroid was always perfect until May, 2017 when my TSH went up to 4.1, September, 2017 was 5.1, and January, 2018 went to 7.3. I'm now on Armour thyroid medication. 15mg to start and will go back in a few weeks for a recheck. I'm sure I will have to go up in dosage.

 

I read an article on the internet where a lady had a high TSH while on Lexapro (that's what I'm on). When she went off, it took a few months, but her TSH went back to normal levels.

 

Thanks for answering my question!

 

Take care,

Frogie xx

[Nada678]

Karma     Thank you for your advice.  I am trying to listen to my body and I don't feel stable enough to add Levothyroxine, as I feel so unstable still from withdrawal.   I am just worried that if I don't treat the hypothyroidism, I will get worse.  I am thinking of trying Raw Thyroid by Natural Sources.

 

I will check out the support group you mentioned.

 

Best wishes

 

Nada

[Frogie]

On January 30, 2018 at 6:52 PM, Karma said:

Frogie, usually if one starts to have issues like this it is revealing another problem. Is your iron optimized? What about vitamin B, in particular B12. It is difficult to check cortisol while on anti depressants because they affect cortisol, but if you have too high or too low cortisol it can cause this kind of reaction.

 

Here is a link to STTM that provides some explanation about this:  https://stopthethyroidmadness.com/ndt-doesnt-work-for-me/

 

You should probably call your doctor about the drowsiness.

 

Here is a patient advocate site for thyroid: Natural Thyroid Hormones International Yahoo group  My only caution is while they really know thyroid, they don’t know antidepressant withdrawal.

 

Nada, please see the stopthethyroidmadness link above I provided in this email. Your experience with levothyroxine is classic. Applying thyroid is revealing other health issues. I am a big believer in natural desiccated thyroid, but the problem with the UK is it is difficult to get NDT or even T3. There is a UK thyroid group you may find helpful:  tpa-uk.org.uk created by Sheila.  Sheila has been a tireless advocate for people with hypothyroid. Based on your system already showing it is sensitive don’t let them tell you to rapidly make any changes.

 

It is possible withdrawal is causing the thyroid issue. You can treat thyroid while in withdrawal, but you need to make only one change at a time. You need to check iron and other nutrients to ensure they are in a good place and then you can very slowly add thyroid hormones. I always recommend you track and rate your symptoms daily so you can tell whether you are improving, stable or getting worse. 

 

I started thyroid while taking somewhere between 375mg and 300 mg Effexor, 1 mg Xanax and 200 mg gabapentin. I have been tapering for many years and have been able to optimize my thyroid treatment during the taper. But you have to be patient and really listen to your body.

 

Hope something here is helpful,

Love and light,

Karma

Hi Karna:

 

I finally talked to the dr today. He told me to stop taking the Armour Thyroid for about 3-4 weeks then come back in and get retested. I tried Levothyroxine almost a year ago. I was on it for 4 days and did nothing but throw up about 30 minutes or so after taking it. He doesn't understand why the Armour is making me so tired, but it could be related to the tapering of Lexapro. I had my Iron checked and it was ok. But could I take Iodine (does it come in a supplement)? If so, how much? 

 

Nada, I wish you more luck than I'm having. I'm getting really frustrated.

 

Thanks again Karma for helping me.

 

Take care,

Frogie xx

[Karma]

Several things need to be in place for thyroid supplementation to be successful. I understand you can’t supplement vitamin B, but if you are deficient in B you are not likely to be successful with thyroid supplementation. So, something else may be going on. It could be due to symptoms from coming off Lexapro. A holistic physician or functional medicine doctor may be able to help get to the root and help you with a balanced approach.

 

It it may be worth it to join the Yahoo group to get their opinion on why you would have fatigue symptoms after starting NDT. They may also be able to help you with looking into iodine supplementation. You may need additional nutrients in order for iodine to be successful. See this on STTM: 

https://stopthethyroidmadness.com/iodine12345/

 

You can can get liquid iodine - iodine is a mineral. I supplement half a drop a day of 5%. The way I supplement half a drop is by putting one drop in a small glass of water and sipping down half a day. My other nutrients are all in balance so iodine works for me.

 

Love and light,

Karma

 

 

[Frogie]

59 minutes ago, Karma said:

Several things need to be in place for thyroid supplementation to be successful. I understand you can’t supplement vitamin B, but if you are deficient in B you are not likely to be successful with thyroid supplementation. So, something else may be going on. It could be due to symptoms from coming off Lexapro. A holistic physician or functional medicine doctor may be able to help get to the root and help you with a balanced approach.

 

It it may be worth it to join the Yahoo group to get their opinion on why you would have fatigue symptoms after starting NDT. They may also be able to help you with looking into iodine supplementation. You may need additional nutrients in order for iodine to be successful. See this on STTM: 

https://stopthethyroidmadness.com/iodine12345/

 

You can can get liquid iodine - iodine is a mineral. I supplement half a drop a day of 5%. The way I supplement half a drop is by putting one drop in a small glass of water and sipping down half a day. My other nutrients are all in balance so iodine works for me.

 

Love and light,

Karma

 

 

I really appreciate all the help and information you are giving me.

 

I will look at that yahoo group and I'll read the article you gave me really soon. My glasses should be in this week. I will be able to see.

 

Thanks again...

 

Take care,

Frogie xx

[Frogie]

KARMA - QUESTION!

 

Has anyone, or does anyone take Synthroid (or the generic).

 

As you can see from my signature, my TSH went from 4.1 in May, 2017 to 7.3 in January, 2018. The dr put me on 50mcg Synthroid yesterday (Saturday). 

 

He told me to take it before bed because of the Lexapro and Xanax I take in the morning, afternoon and evening. I waited about 3 hours after I ate dinner and had no caffeine before I took it.

 

About 3:30am, I woke up really jittery, sweating and hot. 

 

Has anyone had any of these problems? If so, is it normal and my body needs to get used to it, or should I call my dr Monday about this?

 

I googled it. One site said they were major symptoms and to call my dr right away. Another one said these are side effects and if they are bothersome or don't go away talk to my dr. So, I'm very confused.

 

Any help would be greatly appreciated. 

 

Take care,

Frogie xx

[Frogie]

I went back to the dr yesterday. He took me off Synthroid. He said because my TSH is 7.03 (I got that wrong) and my other numbers are within normal range I could have subclinical hypothyroidism. He wants to check it again in 6 months. But my physical is before that so it will be checked then. I don't have any other problems other than being tired in the afternoon. My skin isn't dry, my hair isn't falling out, my nails aren't brittle and I'm not constipated.

 

I am just so tired of nothing working. I wish he would have left me alone and just kept watch. Hopefully this won't last long since I only took it for 5 days.

 

I can't take B Vitamins, shoot me to the moon and back, but I was reading where Vitamin C was good.

 

But I might just leave everything alone and keep tapering and see what happens.

 

He promised me we would come up with a plan so if I needed meds he would figure something out.

 

Just freaked out right now!

 

Frogie xx

[Frogie]

HI Karma:

 

My TSH actually went down from 7.03 to 5.01 without medication. My dr put my on 15mg NP Thyroid. I've taken it for 2 days and haven't been sick!

 

My T3 and T4's were a little low but within normal limits.

 

He said it may be subclinical hypothyroidism because of the taper of Lexapro and then I have Xanax to go.

 

Have you ever heard of this?

 

Thanks for the help.

 

Take care,

Frogie xx

[Frogie]

Hi Karma:

 

Here are my numbers. The lab was supposed to do a Reverse T3 but I guess they didn't. It has been normal though. They were drawn on 3/29/18.

 

Tsh: 5.06 - range .0450-4.50

Thyroxine (T4) 8.7 - range 4.5-12

T3 Uptake 25 - range 24-39

Free Thyroxine index 2.2 - range 1.2-4.9

Thyroid Stim Immunoglobulin <0.10 - range 0-.55

TgAb+Thyroglobulin <1 - range 0-.9

Thyroglobulin by IMA 32.4 - range 1.5-38.5

Thyroid Peroxidase (TPO) Ab 13 - range - 0-34

Triiodothyronine Free Serum 3.3 - range 2.0-4.4

 

So, does everything look ok except my TSH? Do I Hashimoto? I forgot to ask the dr.

 

I was put on 15mg NP Thyroid. I have to go back in the middle of May to have blood work done again.

 

Thanks,

Frogiexx

[divalee]

Karma I am so happy to find this page.

 

I have hypothyroidism - I have pins and needles in my head, face, lips and tongue and pressure across the bridge of my nose.  My ears feel like there is pressure in them.  I went to my ENT doctor and I am perfect - ears perfect, sinuses perfect, throat too.  He knows about my WDS and he told me that with high anxiety the muscles in your body including your head will give you al kinds of symptoms and pins and needles is one of them. 

 

When I see my GP he brushes off me having any further tests done other than the main one everyone gets.  I am taking synthroid and my levels are all within normal limits.  I am very depressed but it is because I have many many WD symptoms and my anxiety hits the roof daily compromising my Central Nervous System.  

 

Just to say here I knew about 5 people who have hypothyroidism and they are just fine - they are taking synthroid and have no problems at all......so why am I having such a terrible time....just wondering is all.   And another thing I am so thin since I came off Zoloft.....I was 122 lbs before and when stopped it went down to 108 and cannot gain anything for the life of me.

 

I can ask him to have the further tests required - and pay for them privately.  I live in Canada where all blood tests, surgeries doctors visits, etc are free.....but if he will not test any further then I have the option to go to a private clinic and pay for it which I am willing to do.....

 

Can you tell me exactly what I should ask for - and then I will have it done privately.

 

Thank you so much

I have lost all of my hope and courage -  it will be 5 years off totally from Zoloft and it is the only medication I ever took, but still have many many symptoms.  I know Alto was even much longer with her WDs - 

 

Please tell me exactly the tests I should further have with hypothyroidism.  

 

Thank you so much Karma - you are so well informed

Love

Lee (f)

 

[Blondiee1915]

@divalee - how are you doing with your hypothyroid? I am recently diagnosed as well (2 weeks actually).  I would love to hear from you. 

[Karma]

@divalee, so sorry I missed this post from April. This is the guidance I follow for which labs: https://stopthethyroidmadness.com/recommended-labwork/

 

Since you’re in the UK the information on this page may help you: https://stopthethyroidmadness.com/uk-thyroid-news/

 

I continue using a combination of natural desiccated thyroid and T3. I’ve been fortunate to never be on T4 only meds like synthroid or T4 generics. I’ve influenced a few medical professionals with the information from STTM, but I’m in the US and we have a different system.

 

For anyone seeking guidance and education on thyroid, I highly recommend: https://stopthethyroidmadness.com/

 

@Blondiee1915, your supplement list looks good. Are you supplementing to improve thyroid or are you taking a thyroid med? Reason I ask is if iron isn’t optimized before starting thyroid meds you could have symptoms. It is a similar thing with adrenals. If adrenals aren’t supported the body may not be able to utilize thyroid hormone properly and symptoms will show up. 

 

Hope something here is helpful.

 

Love and light,

 Karma 

[Kittygiggles]

Hi Blondiee,

 

I would echo Karma's advice and also add the link below.

 

https://thyroidpharmacist.com/articles/which-thyroid-medication-is-best/

 

I hope you find the link above useful and find a doctor that is willing to get you all the tests Karma linked at

 

https://stopthethyroidmadness.com/recommended-labwork

[Blondiee1915]

hi Karma, 

 

I am on thyroid med (desiccated thyroid).  I started two weeks ago and still feel symptomatic.  I understand that it will be a bumpy ride until I find the dose that helps.  I am working my dose up and hoping for some relief.  I do have adrenal fatigue and I am working on that as well with adrenal cortex and adrenal complex.  My iron is optimal (except for my ferritin), I am working on that as well.  

 

How long did it take for you to notice a positive change once on thyroid medication? 

 

B

[Blondiee1915]

Thank you @Kittygiggles.  I had all of the tests done (except for 13),  I am working with a doctor now who is monitoring and I am going to do another blood work before I go to see him next month.  I am 2 weeks on thyroid meds, still not much relief

[Kittygiggles]

It can take a couple of months for symptoms to improve unfortunately. Some people only feel better when their TSH is lower than the arguably outdated ranges used presently. With your doctor's help you could ask for an increase in medication to lower the TSH further but this would be something to do when your approximate dose is reached which can take several months of waiting then testing. The good news is that your body is finally getting the hormones it's needed! 

 

It's not fun having hypothyroidism but there is hope: many people reduce many to most of their symptoms, or live symptom free when they've sorted out their treatment protocol. Some go on and keep digging to find out the cause of their condition and can experience complete remission. I live with this hope daily and am one of the ones chipping away at finding out why I have Hashimoto's. I now test negative for antibodies, which is great but I have a long way to go to sort all this out (one of which is finishing with fluoxetine). It's great that your doctor was okay with all the tests! I found a good doctor too that can order all the tests (with a little persuasion) but I haven't been able to get them all unfortunately. This is because my country's labs can't seem to supply them but I keep looking for a lab that understands what is needed to get to the bottom of this. 

 

Wishing you all the luck and success with this!

[newtonsmom2000]

Hello Blondiee,

 

There is a new book, available in the UK- the author is a thyroid patient and lives int he UK.  It's available on Amazon - The Thyroid Patients Manuel by Paul Robinson.  He is a wealth of knowledge, a Hashimoto's patient and worked tirelessly to solve his thyroid issues.  

 

It takes time to get thyroid issues adjusted.  I, myself, went through quite a battle because no one recognized my thyroid was failing due to extensive exposure to radiation.  I've been on thyroid meds for 24 years and had no understanding I was suffering from an inability to convert the thyroid hormones I was taking.  I also went through a lot of drama trying to find a physician that understood my situation and was willing to not interpret my state of health from lab tests.  

 

Patience and perseverance are so important as you work through these issues.  It's so easy to get in a hurry and want things to be different right away.  There's also the need to take action when things aren't working out.  You have to learn "you,"  and be willing to advocate for yourself.  You've already got that part of the equation worked out or you wouldn't have found yourself here weaning off psych meds.

 

Good luck to you.  

 

I would post a link but I'm in the US.  

[Blondiee1915]

@newtonsmom2000 & @Kittygiggles - thank you both for the input.  I am realizing that this will take time.  I guess being in WD for 2 years and struggling with fatigue for so long and finally finding a doctor that is willing to treat I got my hopes high and expected quick results.  I will keep everyone posted on my progress.  ❤️❤️❤️ 

 

 

[bubbles]

Today I'm slightly updosing my NDT. I think I've probably always been undertreated for the hypo, and lately I've been pushing for a higher dose. I'm thinking this will be as far as I can take it without pushing my T3 out of range. I'm hoping that it will improve my cholesterol (not scared of cholesterol but it is a marker for being undertreated) and it would be lovely if the updose made it possible to lose weight. I know I'd still have to actively try to lose weight, but it would be nice if if it weren't like pushing a boulder uphill. With someone pushing the boulder downhill at the same time.

 

I had a tiny updose a few months ago and I think I've stopped gaining weight, so that's hopefully a good sign.

 

Has anyone managed to get their thyroid hormones optimal (for now I am ignoring TSH) and managed to get their weight under control?

 

[Karma]

Yes. When my thyroid treatment is optimal I naturally lose weight until I get to my normal weight. Since taking control of my thyroid treatment my weight only varies by about 5 pounds at the most. If it starts to tick up I look at whether my thyroid treatment is optimal. However, I eat whole food, limit sugar and avoid a lot of processed foods. If I start to get cravings I look at my thyroid treatment.

 

I completely ignore TSH. I go by Free T3 and Free T4. I recently learned that if you supplement biotin it will affect your thyroid test results. It doesn’t affect the thyroid just the lab results. There have been times when Free T3 has come in high when I felt optimal.  After some experimentation I discovered that even low dose biotin like in a multivitamin can cause the test responses to be artificially high. I get my best results by fasting biotin for at least 48 hours before a lab draw.

 

 It is important to ensure iron, B12, and adrenals are in an optimal range in order to optimize thyroid. Excessive stress can cause everything to get out of balance. I had a minor auto accident earlier this year and while no one was hurt it was stressful for me. I’ve been working to get back in balance most of the year, but I think I’m there.

 

Check out Stopthethyroidmadness.com for information and guidance. I ‘ve found their information very helpful over the years.

 

Love and light,

 Karma 

[bubbles]

Hi @Karma

 

My iron is pretty good. Well, ferritin is all that was measured but it was good. 80? Range 30-300, but from what I can gather 80 is good, and frankly I can't get it higher than that. Not sure about adrenals and it would require me going to a naturopath to get that tested. I'm not opposed to that , but it's not the right time of year to be trying to find a new practitioner. I am assuming that my B12 is fine as I eat lots of animal foods (in order to get that ferritin good) but haven't actually measured it. I'm due some blood tests in a few months so it might be worth adding in then.

 

I've been dosed to the TSH until recently (for many years), and I think that it has actually kept me a bit hypo for all that time. My FT3 and FT4 were in range, but low in range.  I suspect that, pre-thyroid disease, I tended to run on the higher side of normal, based on how I was effortlessly slim as a young woman etc. Hard to tell - as a young woman I didn't rush to the doctor and say "I feel great - quick, do a blood test!" Kind of wish I had!

 

I have gained a lot of weight in the last years. I have 40 or 50 pounds to lose, and even more if I were to want to get to my youthful weight. My resting metabolic rate is dreadfully low. I figure that was a combination of the thyroid and dieting (or effectively dieting - weight loss from depresson too) over the last two decades. I'd really like it if my resting metabolic rate could hit the bottom of the healthy range.

 

For now, I'm trying to get my FT3 optimal, FT4 to do whatever it will, and for now I'm ignoring the TSH. If I can get optimal on the FT3 and feel well, well I'll re-evaluate the TSH thing at that stage. I'm feeling well. I feel like I have more energy - I think it's possible to have felt an immediate lift from the T3 component. I'm very hopeful for this to b optimal.

[Kittygiggles]

On 12/21/2018 at 3:03 AM, bubbles said:

I'm hoping that it will improve my cholesterol (not scared of cholesterol but it is a marker for being undertreated) and it would be lovely if the updose made it possible to lose weight. I know I'd still have to actively try to lose weight, but it would be nice if if it weren't like pushing a boulder uphill. With someone pushing the boulder downhill at the same time.

 

Hi bubbles,

 

I understand your struggle. I notice that my weight has a 10% 'thyroid zone', which just doesn't budge unless my treatment is going well. It sounds to me like you are conscious of your diet and being careful with what you eat. Hopefully you'll get to your goal weight relatively quickly as you improve your thyroid treatment.

 

I got down to a healthy weight (optimal BMI) with overt hypothyroidism and being underdosed for years. I did it with my whole plant-based diet, with no processed food (that means no oils, refined sugar, wheat, soy, dairy) with fish thrown in sparingly (something I am working on reducing further if it is safe to do so). Another thing I've done for years is only eating once a day. However, I don't know if it is healthy to do that, despite fasting being fashionable, I actually do it as a result of an old habit. It felt natural for me to eat once a day for the last decade, with the occasional second meal if I was hungry. I really don't ever feel the need to eat more often so I'd consider myself lucky for being able to stick with it with no effort. 

 

On 12/22/2018 at 3:29 AM, Karma said:

I completely ignore TSH. I go by Free T3 and Free T4. I recently learned that if you supplement biotin it will affect your thyroid test results. It doesn’t affect the thyroid just the lab results. There have been times when Free T3 has come in high when I felt optimal.  After some experimentation I discovered that even low dose biotin like in a multivitamin can cause the test responses to be artificially high. I get my best results by fasting biotin for at least 48 hours before a lab draw.

 

Hi Karma,

 

I've done a lot of research on my Hashimoto's, including Wentz, hypothyroidmom, STTM, and TPAUK. Thyroid disease is such a stubborn condition to deal with. I hear a few people say they ignore TSH but I was hoping you'd be so kind as to clarify that. Of course, your words are clear, what I mean is, do you completely ignore it? 

 

I still think TSH is useful for adjusting treatment even though I wish I could just ignore it as well! For example, my T3 has been high (outside of the range) for a while, and my T4 almost at the top of the range but my TSH has remained elevated (~8, instead of the target of ~0.5 to 1). The answer is likely a T3 pooling and reverse T3 issue. I am making sure I have a good nutritional profile and I think my liver is working hard to convert the T4 I take (I am still on levothyroxine but hoping to move to NDT in the coming months). So my point is, it seems that my TSH indicates that levothyroxine is not working as intended or my body is not converting it appropriately (into reverse T3 for example). Without the TSH, and looking at T3 and T4 alone (I can't get a reverse T3 test here yet) it would look like I am being treated optimally. In your case, are there any times where you would be interested to know your TSH? 

 

I'd love to hear your thoughts about TSH!

[Karma]

TSH is a pituitary hormone, not a thyroid hormone. It is an indirect and poor measure for dosing, although it is considered the gold standard. It can be helpful for initial diagnosis if used in combination with other labs and patient symptoms.

 

If you have reasearched STTM then you may have found stories of people whose thyroid treatment was yanked around due to dosing by TSH. That is what I experienced in the beginning that caused me to do my own research. I have been on NDT and or NDT and T3 only throughout my entire treatment.

 

For nearly 8 years my TSH has been undectable at < 0.0006. I have completely ignored it. I recently had labs done for a new provider and she ordered a TSH. It was 0.007. But she is unconcerned because we consider how the patient presents and other labs. I suspect my TSH had been undectable due to taking supplements that contained biotin as mentioned in a previous post.

 

Let me be clear I am talking Free T3 and Free T4. If your Free T4 is near the top of the range it could indicate reverse T3. Optimal treatment has Free T3 near the upper part of its range and Free T4 no higher than mid-range. A reverse T3 is the best way to tell, but you are saying you can’t get one where you live. I’m not sure what you can do in that case.

 

I recommend you join one of the thyroid patient advocate groups. While I have knowledge in this area because I’ve done the research and lived the treatment with my body, the moderators in the patient advocate groups have a much broader grasp of these things. 

 

Love and light,

Karma

[Karma]

I always remind people to ensure what I call co-factors are addressed before trying to optimize thyroid treatment.  I've attached a spreadsheet of co-factors to consider, but these are US values only.

 

_Ideal Levels-1.xlsx

[Kittygiggles]

Thank you for responding. I really appreciate your perspective because you've reached a healthy state with your thyroid. Anyone who's managed that has overcome tough obstacles and has valuable insight. 

 

10 hours ago, Karma said:

If you have reasearched STTM then you may have found stories of people whose thyroid treatment was yanked around due to dosing by TSH. That is what I experienced in the beginning that caused me to do my own research. I have been on NDT and or NDT and T3 only throughout my entire treatment. 

 

The group of people dosed poorly via TSH probably includes most people with thyroid disease; this includes me and like you, made me do my own research. It's unusual that you didn't start out with T4, it makes for an interesting perspective. 

 

10 hours ago, Karma said:

Let me be clear I am talking Free T3 and Free T4. If your Free T4 is near the top of the range it could indicate reverse T3. Optimal treatment has Free T3 near the upper part of its range and Free T4 no higher than mid-range. A reverse T3 is the best way to tell, but you are saying you can’t get one where you live. I’m not sure what you can do in that case.

 

When I talk about T3 or T4, I am always referring to free T3 and free T4 but perhaps I should have used FT3 and FT4 respectively. I suspect the definition of optimal varies from person to person. I hope to get RT3 done but there are obstacles with laboratories here. I'm seeking private options instead.

 

10 hours ago, Karma said:

I recommend you join one of the thyroid patient advocate groups. While I have knowledge in this area because I’ve done the research and lived the treatment with my body, the moderators in the patient advocate groups have a much broader grasp of these things. 

 

I am a member of TPAUK but as with them and any group or individual who expresses certainty about treatment protocols for thyroid disease, it alarms me: I think treatment is individualized and it is vital for people to be skeptical during this journey. Sorry if I implied it but I wasn't expecting you to help me with my Hashimoto's - not at all! It was more to ask you your perspective on TSH, not to review my case. I merely mentioned a little about my situation as without RT3, TSH is still useful for me; also, although less common, a TSH test can help identify a change in Hashimoto's (even when antibodies are low), a regenerating thyroid gland or thyrotropinoma. I don't think I'll ever ignore TSH for those reasons alone. 

 

10 hours ago, Karma said:

TSH is a pituitary hormone, not a thyroid hormone. It is an indirect and poor measure for dosing, although it is considered the gold standard. It can be helpful for initial diagnosis if used in combination with other labs and patient symptoms.

 

I agree, it can't be ignored completely but for dosing it seems it is better to go by symptoms, T3, T4, and RT3.

 

10 hours ago, Karma said:

I always remind people to ensure what I call co-factors are addressed before trying to optimize thyroid treatment.  I've attached a spreadsheet of co-factors to consider, but these are US values only.

 

_Ideal Levels-1.xlsx

 

Thank you for the summary, it is fairly comprehensive and very useful; I am accustomed to US and EU values. It matches the values I refer to fairly closely. There are a few more things one could check too, such as zinc and copper, but keeping track of everything makes treating this disease hard and expensive work. One day I hope that thyroid treatment becomes a lot less complicated and there can be clear evidence supporting an ideal treatment plan but it is all very individualized. I think Dr Wentz has developed a nice body of evidence to support a treatment plan that works for most people but with something as complex as thyroid disease, I think it is important to question everything until much more data are available demonstrating how the majority of sufferers can get their thyroid disease into true remission.

 

How this links to SSRIs is also an avenue I've not stopped exploring because I am convinced that fluoxetine's influence on the thyroid-pituitary axis has a causative role in some people's thyroid disease. Hopefully, we get to see some real progress in our lifetime! 

 

Do you have any perspective you'd be willing to share about SSRIs and a possible causal link with thyroid disease? I am ever hopeful that fluoxetine had a role to play in my development of Hashimoto's and that it could be reversed. 

[Rachellynn]

On 12/23/2018 at 5:30 PM, Kittygiggles said:

How this links to SSRIs is also an avenue I've not stopped exploring because I am convinced that fluoxetine's influence on the thyroid-pituitary axis has a causative role in some people's thyroid disease. Hopefully, we get to see some real progress in our lifetime! 

 

I hope so too. I’m 37 and was on Prozac all my adult life (until 33) and have been suffering ever since i got off that drug. I also have hashimotos but Western Dr’s don’t take that seriously, anyone else? My HPA AXIS is def off and I’ve just started taking beef organs (nutrient dense superfood - i know it sounds weird but I’m tired of possibly synthetic vitamins), potassium broth and coconut water in an attempt to bring up some nutrient levels. 

 

I woah Dr’s also now knew of how hurtful AD’s are - how are they so clueless?

 

anyone else experience low blood volume and dryness? Combating that again after a shock to my nervous system. 

 

I just need love I think 😕

[bubbles]

Psych symptoms are common with thyroid disease, so my suspicion is that SSRIs are the effect of the hypothyroidism, not the cause.

[Kittygiggles]

On 12/26/2018 at 2:41 AM, bubbles said:

Psych symptoms are common with thyroid disease, so my suspicion is that SSRIs are the effect of the hypothyroidism, not the cause.

 

Certainly, thyroid disease can cause psychological symptoms. This can't account for cases where the mental disorder precedes the thyroid disease and SSRI treatment. There is limited evidence from animal trials demonstrating that fluoxetine interferes with the thyroid-pituitary axis. It is hard to investigate whether SSRIs could be a possible trigger of Hashimoto's (or other autoimmune conditions) in humans but it is likely a fruitful endeavor. This is because SSRIs are very destructive so by some direct or indirect mechanism, it seems plausible that they would trigger an autoimmune response in some people.

 

To the best of my knowledge, clinical trials in people have yet to demonstrate a causal link between SSRIs and hypothyroidism. However, Hashimoto's can be extant for many years in people who are asymptomatic and this lengthy period can precede significant thyroid destruction. My guess as a lay person is that a trial would be needed where people are tested for autoantibodies before, during, and following SSRI treatment. 

 

For example, fluoxetine contains 3 fluoride atoms (F), which is an element that suppresses thyroid function. Although abundant in nature, a daily consumption limit has been set by governments because F consumption is known to cause a variety of ailments. Fluoxetine consumption along with typical exposure (from toothpaste, fluoridated water, food) to F may be enough to trigger an autoimmune condition but this has yet to be established conclusively. My goal is to discover whether this hypothesis has any merit; I suspect that it does. Maybe I'll start a thread about it if acceptable to SA. 

 

I could be wrong about all this but F is one of many toxins and pathogens I'm investigating as a possible cause of my own Hashimoto's. My problem is that I know very little about physiology, biochemistry, and autoimmune disease. I also lack any significant interest in it. 

[Blondiee1915]

Does anyone know if adjusting the thyroid med dose can cause the symptoms to increase? At first when I started armour thyroid (I am diagnosed as hypo) I had a few days feeling like I have a flu and then I felt better now I went up again and feel even more fatigued and flu like.  I am also feeling more anxious and it is concerning to me.  Is this normal?