What To Do - If Thyroid Meds Not Working

[Steve]

I worked my way up to 2.5 grains of Westhroid Pure (been on that for a month). Nothing is happening.
I've been on the meds for a total of 2 1/2 months now.

Current:
TSH fell to 0.04.
Free T3 is good at 3.79 (2.5-3.9).
Free T4 is 0.81 (0.6-1.2)

Prior to Thyroid Meds:
TSH 3.13
Free T3: 2.98
Free T4: 0.97

My oral temp & pulse have not budged. As I sit here pulse is 60.
Don't have my thermometer but temp ranges from 96.6 to 98.1 after my first meal.
____________________________________________________________________
Other Current Labs:
Serum Iron: 130 (45-182)
Globulin: 2.2 (2.1-3.9)
A/G Ratio: 1.95
Bilirubin: 2.4 (0.3-1.2) - Probably Gilbert's
Transferrin Level: 222 (180-254)
TIBC: 311 (250-450)
Ferritin: 95 (24-336)
DHEA-S: 130.2 (34-569)
Cortisol: 6.7 (it says normal)

This mess started when I went hyper just over 2 years ago. Was tested for all antibodies. The only one positive was for TSI. The TSI was always below range around 89, but a normal person should be at 2 supposedly, so this is probably significant.

 

[Steve]

I've been on thyroid replacement for about 4 months now, and my body has had zero response.
My doctor upped my dose of Westhroid Pure from 2 grains to 3 grains, and my only response is an even lower temperature.
My waking temp today is only 96.6 which is the lowest in 3 months.

What on earth is going on?
How can my metabolism have absolutely no response (or even get worse) when taking thyroid?

 

[marsaday]

Metabolism is a combination of the thyroid (fuel) and the adrenal hormones (power transmission) working together to produce output, which we want to be higher than it currently is. High output = good temps, good stamina, good feelings etc etc.

So it seems your adrenal side needs support as your body is lowering output in response to more fuel.

Why didn't you try T4 only first to see how this went. T4 is much less demanding on the adrenals and so if adrenal health is not so good, this is a good starting option. You could also look into using T3 only, but in very small amounts dosed 2 or 3 times per day (but start with one dose for the first few days). You would start with 1/8th of a T3 tablet which usually = 3mcg if using a 25mcg tablet. This amount of T3 is not going to place big demands on your adrenals.

2.5 grains = 90 T4 and 22.5 T3

What is your vitamin D level. If low this will have a negative impact on thyroid function, so optimise this vitamin. What is the waking temp each morning? This gives a good indication on metabolic activity.

Iron stores are a bit lower than i would expect for a male. Low iron impacts thyroid function as well.

Do you have a reference range for cortisol ? Generally cortisol will be lower if you are struggling to get thyroid meds to work. Thyroid and cortisol want to be in balance as they work with each other. If you have been low in thyroid for a while cortisol will lower down. So when you give thyroid meds the cortisol side of things can't get up to speed.

 

[Steve]

Metabolism is a combination of the thyroid (fuel) and the adrenal hormones (power transmission) working together to produce output, which we want to be higher than it currently is. High output = good temps, good stamina, good feelings etc etc.

So it seems your adrenal side needs support as your body is lowering output in response to more fuel.

Why didn't you try T4 only first to see how this went. T4 is much less demanding on the adrenals and so if adrenal health is not so good, this is a good starting option. You could also look into using T3 only, but in very small amounts dosed 2 or 3 times per day (but start with one dose for the first few days). You would start with 1/8th of a T3 tablet which usually = 3mcg if using a 25mcg tablet. This amount of T3 is not going to place big demands on your adrenals.

2.5 grains = 90 T4 and 22.5 T3

What is your vitamin D level. If low this will have a negative impact on thyroid function, so optimise this vitamin. What is the waking temp each morning? This gives a good indication on metabolic activity.

Iron stores are a bit lower than i would expect for a male. Low iron impacts thyroid function as well.

Do you have a reference range for cortisol ? Generally cortisol will be lower if you are struggling to get thyroid meds to work. Thyroid and cortisol want to be in balance as they work with each other. If you have been low in thyroid for a while cortisol will lower down. So when you give thyroid meds the cortisol side of things can't get up to speed.

My doctors have never suggested anything except NDT, so that's why I never tried T4-only or T3-only.
The Dr I have now though would probably be open to either option, so I'll ask her about switching things up.

Vitamin D was 70.
Waking Temp is normally 97.1, but has fallen to 96.6 now that I've started 3 grains.
Cortisol 6.7 UG/DL at 10:44 AM
(8.7 - 22.4) 7-9 am
(<10) 3-5 pm

So do you think the best option is T4-only, or T3-only?

 

[Orion]

RP has mentioned that cholesterol at ~200 or above would be best to utilize thyroid. Sugar, fruit, OJ, juice, can help raise it.

Eaten and stored PUFA can block vitamin A and thyroid transport. Are you eating low PUFA, avoiding low blood sugar(stress response) and sleeping well?

 

[Steve]

RP has mentioned that cholesterol at ~200 or above would be best to utilize thyroid. Sugar, fruit, OJ, juice, can help raise it.

Eaten and stored PUFA can block vitamin A and thyroid transport. Are you eating low PUFA, avoiding low blood sugar(stress response) and sleeping well?

Cholesterol was 244 (used to be 200 before going hypo).
I drink OJ & milk every day. Eggs almost every day. Carrot salad. Gelatin. Seafood. Beef. Starches (yam, potato, rice).
I eat very low PUFA for the past couple months, and pretty low prior to that for years.
I eat all day long & don't think I experience low blood sugar. I sleep fairly well although I always wake about 3 am to pee & then go back to sleep.

I was perfectly healthy until I went hyper (possible Grave's disease)..................maybe due to stress or an iodine supplement.
Went hypo 6 months after that, and now I'm a mess.

 

[marsaday]

Cortisol is low, so this is an issue. You don't have enough cortisol to grab the T3 to then go into the cells. If FT3 levels are nice and high you have a body just letting it float in the blood stream doing nothing. It wants to be getting into the cells.

Vitamin D is best at 75-200.

 

[Steve]

Cortisol is low, so this is an issue. You don't have enough cortisol to grab the T3 to then go into the cells. If FT3 levels are nice and high you have a body just letting it float in the blood stream doing nothing. It wants to be getting into the cells.

Vitamin D is best at 75-200.

So what do I do?
This stinks! I was just a perfectly normal hiker/biker dude before all this. Ugh!!!

 

[marsaday]

Speak to the doc about it and find out why cortisol is low. You can do a 24h saliva adrenal test to see how the adrenals are working. You can use pregnenalone to boost cortisol, but it is worth speaking to the doc first. You probably need LESS thyroid meds and some hormone support for the adrenal side of things.

It is tough to get balance back and there is no one set plan for all of us. We have to trial stuff and and see how it goes. Understanding what is happening behind the scenes is the first part to getting on top of things.

 

[Steve]

Is there any chance my body would heal on it's own if I just live a very healthy life (good nutrition, low stress, time outdoors, etc, etc, etc)?

I was extremely stressed out for a long time when this all happened, so I'm sure that had something to do with it.
Now that I'm no longer stressed is it possible that my body will return to normal?
I really don't feel comfortable taking drugs & messing around with all the hormones in my body, especially since my 1st attempt to do so has already become quite complicated.

 

[Velve921]

Is there any chance my body would heal on it's own if I just live a very healthy life (good nutrition, low stress, time outdoors, etc, etc, etc)?

I was extremely stressed out for a long time when this all happened, so I'm sure that had something to do with it.
Now that I'm no longer stressed is it possible that my body will return to normal?
I really don't feel comfortable taking drugs & messing around with all the hormones in my body, especially since my 1st attempt to do so has already become quite complicated.

As difficult as it may seem, your healing process could take more time as the body goes through adaptation of what you are doing. In the first 3-6 months I was jumping to conclusions as I did not see the results I desired her. Couple key points I would consider for more experimentation:

1. I have found the pre bed time ritual to be the largest game changer thus far. If night time darkness/starvation period is the most stressful time for many people, I load up my pre bed time meal which works wonders for rest and recovery. Fruit, ice cream, milk, gelatin, cheese, salt I like in large doses before bed.

2. Epsom salt baths before bed time can be another large helpful stimulus.

3. Red light and sun light could be my favorite metabolic stimulators. In sunny climates I don't need as much food to keep temp and pulse up.

4. There are a large quantity of food and lifestyle choices that Dr. Peat has discussed; early on I made the mistake of not experimenting in all categories. I would not leave any stone unturned.

 

[marsaday]

Yes you can adapt and get better, but once your body goes off it can take along time to get back on track.

Prior to meds your TSH was in the 3 area. This is not terrible, but many people can feel rubbish when the TSH moves away from 1-2. Dr Mercado in USA sees many patients having issues when the TSH goes above 2.

So was stress stopping your body from absorbing the T3 you were making. Probably, hence why just giving more thyroid meds hasn't been the answer.

Look at the diet, sleep quality, sunlight and see if these things can help, but remember you are always aging and hormone production drops off as we age. So could age be having an effect?

I think hormones are a key nutrient to use when the body goes wrong. Much better than using antidepressant meds, which is what the docs tend to turn to when we are not well.

Hormones work best in small doses and i think your large amount of thyroid meds has not worked because you take too much. What amount did you start on and for how long did you hold that level ? Did you not notice any change at all ?

 

[Steve]

As difficult as it may seem, your healing process could take more time as the body goes through adaptation of what you are doing. In the first 3-6 months I was jumping to conclusions as I did not see the results I desired her. Couple key points I would consider for more experimentation:

1. I have found the pre bed time ritual to be the largest game changer thus far. If night time darkness/starvation period is the most stressful time for many people, I load up my pre bed time meal which works wonders for rest and recovery. Fruit, ice cream, milk, gelatin, cheese, salt I like in large doses before bed.

2. Epsom salt baths before bed time can be another large helpful stimulus.

3. Red light and sun light could be my favorite metabolic stimulators. In sunny climates I don't need as much food to keep temp and pulse up.

4. There are a large quantity of food and lifestyle choices that Dr. Peat has discussed; early on I made the mistake of not experimenting in all categories. I would not leave any stone unturned.

Thank you for the help. I'll keep experimenting with whatever sounds healthy.

 

[Steve]

Yes you can adapt and get better, but once your body goes off it can take along time to get back on track.

Prior to meds your TSH was in the 3 area. This is not terrible, but many people can feel rubbish when the TSH moves away from 1-2. Dr Mercado in USA sees many patients having issues when the TSH goes above 2.

So was stress stopping your body from absorbing the T3 you were making. Probably, hence why just giving more thyroid meds hasn't been the answer.

Look at the diet, sleep quality, sunlight and see if these things can help, but remember you are always aging and hormone production drops off as we age. So could age be having an effect?

I think hormones are a key nutrient to use when the body goes wrong. Much better than using antidepressant meds, which is what the docs tend to turn to when we are not well.

Hormones work best in small doses and i think your large amount of thyroid meds has not worked because you take too much. What amount did you start on and for how long did you hold that level ? Did you not notice any change at all ?

I remember my TSH was 1.5 before all hell broke loose.
It's definitely not an age thing. I'm getting older at 45, but I am without a doubt sick with some kind of disorder.
I started with 1/2 grain & every week I increased by 1/4.
Never felt a thing. Temp & pulse stayed the same.

Here's what happened:
I was taking a 6.25 mg iodine supplement for 2 1/2 years. I read that was a bad idea, so I stopped. A few days later I get an annual checkup & my TSH is undetectable.
I am diagnosed with what seems like Grave's Disease (wasn't certain).
I then became extremely sick, hyperthyroid, but horrible fatigue...........definitely nothing good about this kind of hyper.
Fullness in my ears. Pulse 120 at rest, Dizzy. Anxious. Depressed, Joint Pain. Lost 30 lbs of muscle. All kinds of stuff.
I seriously thought I might die, so I signed all of my stuff over to my girlfriend.

After taking anti-thyroid drugs & beta blockers it died down after 6 months & I became hypo.
My temp & pulse are always low. My energy is horrible at times, better at times, but never normal.
I can be walking around a store & my energy will tank & I'll get dizzy, and I'll just walk around like a zombie.
Whatever it is I always feel it in my head (dizzy, woozy, inflamed), and that always goes along with the low energy.
I still have the TSI antibodies.

 

[marsaday]

So you have antibodies !!! This may mean you have jumped into hashimotos illness. This is where the thyroid is attacked by the body.

You can be hypo one day and hyper the next because the thyroid gland gives off large amounts of hormones under attack and then protects itself on other occasions and so stops giving out hormones.

This issue was discovered by the japanese doc hasimotoe i think. The illness is very common in Japan because they have a high seafood diet and so over load on iodine. Iodine is the reason why the thyroids go crazy. It sounds like this is what has happened to you. Now i have no idea if this is reversible. Have you asked your doc about the thyroid antibodies ?

If you have hashimotos you need to address different areas. Diet is a big one patients use to help control symptoms. Hashi's is a harder form of thyroid function to treat than basic under active thyroid.

So the first thing you need to do is find out what issue you actually have and then take steps to address it. I am not a doc, just a thyroid patient. If you have developed self induced hashi's i have no idea if you can reverse this.

 

[Steve]

So you have antibodies !!! This may mean you have jumped into hashimotos illness. This is where the thyroid is attacked by the body.

You can be hypo one day and hyper the next because the thyroid gland gives off large amounts of hormones under attack and then protects itself on other occasions and so stops giving out hormones.

This issue was discovered by the japanese doc hasimotoe i think. The illness is very common in Japan because they have a high seafood diet and so over load on iodine. Iodine is the reason why the thyroids go crazy. It sounds like this is what has happened to you. Now i have no idea if this is reversible. Have you asked your doc about the thyroid antibodies ?

If you have hashimotos you need to address different areas. Diet is a big one patients use to help control symptoms. Hashi's is a harder form of thyroid function to treat than basic under active thyroid.

So the first thing you need to do is find out what issue you actually have and then take steps to address it. I am not a doc, just a thyroid patient. If you have developed self induced hashi's i have no idea if you can reverse this.

I have TSI antibodies which are associated with Grave's Disease. I don't have the Hashimoto's antibodies. The TSI are called "thyroid stimulating", but can become "thyroid blocking".
But still they shouldn't be keeping my thyroid meds from working.
So my main goal is to get my temp & pulse where they should be, and I'll deal with the antibodies after that, or hopefully they fade away once my body is running better.
What a mess I've gotten myself into!

 

[Peaterpeater]

I'm sorry to hear what you are going through. I understand very well about how it feels to walk around a grocery store like a zombie. It's happened to me so many times. I'd go in with a list of groceries , then feel dizzy/woozy with a breathless type of fatigue and end up leaving without buying anything because I needed to go home and lay down. I don't have Hashi's but I've read about people being able to reverse it. There is a program called the "Thyroid Secret" which is a documentary series about how to reverse Hashimoto's. I don't know how Peaty it is but you can probably just pick and choose to follow what makes sense. Otherwise self experimentation using Peats ideas and "diet" may help you.