[cujet]

UPDATE May 1 2022
Significant success!

I'm now taking T3, and prednisone, a magical combo for me. The elimination of T4 seems to have been the right step, as now I can manage my thyroid levels myself, by feel, quickly. Without that horrible fatigue.

I take:
12mg T3, 6x per day
10mg Pred 1x per day.

To exercise, I take an additional 6mg T3 and 5mg Pred. (the extra is necessary to avoid depletion and loss of energy, a horrible crash, I'm Thrilled.





56, male, former athlete, hashi's 25 years, recently switched back to synthroid 175mcg from NP thyroid due to low T4 and high-ish T3. No change in symptoms.

Here's the deal, for the last 6+ years, I run out of energy rapidly, often within minutes. And it's getting worse every year. I can't even do enough exercise to get my heart rate to rise much before my muscles just stop working altogether. Then I have to lie down and recover for hours.

It used to be that "IF" I could get a good gym session in, I'd feel well the rest of the day. I can't get even one set complete at the gym, at any level of exercise. A bike ride yesterday was 4 mph! Unable to put in any effort at all. Walked the bike home, exhausted.

I also am very fatigued and have a difficult time at work. Having to sit and rest a lot.

Heart CT scan shows a calcium score of 0 and nuclear stress test (I was unable to do much time on the treadmill) shows good heart perfusion everywhere.

AM cort tests show 2.7, 4.2, 6, 7. (scale 6-30) (update diagnosed with secondary adrenal insufficiency)

10mg Pred (taken for skin rash) was a huge help with fatigue and put the problem in mild remission.

Thoughts?

 

[GOLGO13]

Sounds pretty extreme! What are your thyroid lab tests showing now?

I've had some of this when I was still quite hypo early on.

A few thoughts I have are checking other items if your thyroid tests are somewhat normal. Check things like B12, Iron, Vitamin D, Testosterone etc. I understand sometimes B12 tests can be tricky, but not sure. For Iron you'd want the 4 Iron tests and Ferritin.

Try focusing on nutrition. Consider tracking your nutrition for a little bit using a tool like Cronometer.com.

I'm part of a Men's Hashimotos group which may help you on Facebook. Search for "Men with Hashimoto's" ... Just be aware it's mostly alternative medicine based. that being said it's a good group of guys having similar issues.

Good luck!

 

[creepingdeath]

My symptoms were severe but not to your extent.

Your energy levels being so low could be from another autoimmune disease in tandem with Hashi's?

Ever been tested for any others? Lupus, arthritis and so on?

I was never all that tired with Hashi's / hypo.

More of a weakness on exertion along with bad joint & muscle pain.

If I started walking up hill my legs would give out on me and I would lose all energy temporarily.

Joints and muscle hurt constantly....

I'd look into other autoimmune activity.

Chances are you have nothing else going on but it doesn't hurt to eliminate the chance.

GOOD LUCK

hope you feel normal soon

 

[cujet]

Thanks for the responses. Labs will be in a few months. I just switched back to syn T4 last week. Same dose as in the past 175mcg. (before that on natural thyroid)

My labs have always been mid range normal T3-T4 and 1 or lower TSH. Only this latest lab had T4 too low and T3 too high. Hence the switch back to T4 only. Weird, as it's the same dose I've been on for some time.

I've had a massive amount of troubleshooting labs and tests done at Cleveland Clinic. With no results and no form of treatment offered. Iron, D and B12 are all in normal ranges. I take methyl B12 and a multi vit daily.

Slightly unusual lab results:

ANA RNP antibodies 7.6 (range 0-0.9) . NOTE: 7.6 is lower than some lab's threshold of 20 for Mixed Connective Tissue Disease.

Parathyroid PTH varies 60-103 (range 10-65) , Calcium always 9.2 (range 8.8-10)

AM ACTH has been at 2.6 (range 7-63) and is never over 8 (always low or low normal) (I know what it does)

AM cortisol 4.2

 

[GOLGO13]

Well, that's a very short time on the new meds and unfortunately it takes many weeks for things to settle. My guess is the fact that you're off T3 for the week is causing you the issues. T3 is quick acting, and you were getting it before quickly with your meds. Now your body has to compensate but it takes a month or so for all that to occur.

T4 meds have a 7 day half life, so you may start seeing some results in the next week or so.

It will probably be a wild ride for a bit.

Switching between NDT and T4 only can be a bit jarring I understand. So best to stick to one once you get comfortable. The alternative is to get some synthetic T3 in additon to your T4. That is if you felt that NDT was helpful. With synthetic you can adjust the T3 much easier and control it better.

My guess is it's just going to take 6 weeks or so to really start to settle out. Then dose adjustments after that if needed. 175 is a pretty high dose. That would make me think you maybe not absorbing the medicine well. Either by not taking it on an empty stomach and waiting 1 hour before eating or drinking anything other than water. Or you may have stomach issues. If you are back to eating gluten again, consider getting testing for celiac just to be sure. I understand they can do better tests for it.

Sorry to hear you have had all these issues. Hopefully things settle out soon on the new meds.

 

[cujet]

The switch from natural thyroid to Syn T4 has not changed anything. I'm no worse or better. This has been 6 years of crap.

But I agree, I'll give the treatment change time to "settle in" .

 

[creepingdeath]

I waited for two years for anything to happen on T4 only.

All it did was shrink my thyroid & pushed me more towards more severe Hypo symptoms.

T4 is bio equivalent which means the hormone should act the same as your hormone made naturally in your body but chemically it is not the same.

Desiccated thyroid is bio identical to what your thyroid makes naturally and is chemically the same.

The only difference is the amount of T4 &T3 in pigs is different than humans.

But what most people don't know is that desiccated thyroid is cut down to match as close as possible the human t4 to t3 ratio.

My only theory to this is that my pituitary responded to synthetic T4 but my organs could not convert it.

So my thyroid shrunk & my labs.... TSH & Total T4 are within range.

Pituitary thinks everything's OK and makes TSH within range . The Total T4 is the amount of levothyroxine in my system so everything looks OK and within range on labs .

Until I forged on a hand written script to test feeT4 & feeT3 is when I knew the synthetics were not working.

Both were below range & when I showed the Endo he said all that matters is TSH.

I ripped up the lab results in front of him and walked out never to return.

Most doctor ignore how you feel and you become a bunch of numbers to them.

That's when it's time to find another doctor who listens to your symptoms & welcomes your knowledge and perspective.....

 

[cujet]

Thought I'd post an update. 175 Synthroid is a total failure with ever declining energy until I was in a walking coma. While labs show T4 mid range and T3 low, I can't function. I have enough problems with fatigue, adding to it with low T3 is not helping matters.

I know the doctors think they understand the situation, I disagree. When I'm told "I can't help you" by the endocrinologist, I think it really means, "I don't understand how any of this works".

One other weird problem maybe someone here can address. I feel awful about 1-3 hours after taking thyroid meds. If I don't take them, I feel far more normal and actually function during the day, until I crash at the end of the day. I cannot go long without them, but for a time, I do feel better. Whas up with dat?

 

[GOLGO13]

Cujet,

This article is written by an endocrinologist. I don't always agree with him, however, your endos should not push back. I would also go to another endo if they are not working with you well. https://hormonesdemystified.com/t3-controversies-how-much-t3-should-i-take

Anyways...in this article it talks about people with end stage hashimotos may benefit from taking some T3 with their T4...in case you needed to convince your endo to give you some T3. At this point with the above information it's probably worth a try.

Have you done any other lifestyle changes? Tried going gluten free for a time period?

 

[GOLGO13]

Sorry...didn't read our thread above much.

I'd try those lifestyle changes a bit in case you have not tried yet. 175 is a pretty high dose, which makes me think absorption issues maybe at play. Gluten sensitivity or celiac is common with hashimotos.

I went to the Cleveland Clinic to 2 endos early in my situation. They were not horrible but not great. So you may need to keep looking for a new one that's better or find a PCP that is experienced in thyroid treatment.

Endos seem not very good for more complex cases.

It could be worth trying some T3 with your T4, even if NDT didn't work well in the past. NDT doesn't work for everyone.

What's your recent labs like?

 

[Lovlkn]

Cujet,

Anytime someone takes NDT naturally you will test higher in FT-3 than FT-4 due to its formulation being high in T3 hormone. Its obvious your doctor has not a clue if they removed you because of high FT-3.

What did your labs look like on NDT?

Have they tested your D and B-12 levels? Having those optimal helps with fatigue

 

[cujet]

Just wanted to post an update. Switched back to 135MG NDT. Better than T4 only, at least I can think now. But still very tired with severe exercise intolerance. Often I can walk about halfway around the block, then tired beyond belief. I feel like I'm getting to the point where I'm going to be bedridden in short order.

I've done the strict gluten free diet, and other strict diets. No help what so ever.

D = 31, B12 = 1200 (over the normal range) I've cut back on B12, no difference.

Something new, vision in the left eye is "jumpy" when looking around, and pain behind eye, but clear vision when not moving my eyes. Eye doc sees no problems, no detached retina. Brain MRI completed, I get the results on Thursday (today is Sunday)

 

[GOLGO13]

Hmm...consider nutrient deficiencies. Some common ones are Iron (get 4 tests and Ferritin), Your vitamin D is pretty low You want that up around 50 at least.

having thyroid levels off can certainly mess with our eyes. I had a lot of weird symptoms there also.

Do you have your most current labs? Or do you get those drawn after a little bit?

One thing with this issue is it can impact nutrients. Do you take any Magnesium? That's one that can be a key.

I take a multivitamin, 200 Magnesium Glycinate (400 usually suggested), 100 Vitamin K2 MK7, 5000 Vitamin D3 (only gets me to 50), and sometimes Zinc if I eat something like liver which is heavy in copper.

Some multivitamins have K2 in them, but mine does not.

 

[Lovlkn]

Definitely need to supplement D. Prescription is 50kIU weekly for 12 weeks. Or you could choose to do on your own and retest. It takes me 5K IU daily to maintain 75# range and I’m outdoors a lot

 

[cujet]

Thought I'd post a Sep 2021 update. I've put in a lot of effort (and money), lab testing, genetic testing, Concierge docs, Rheum docs, Endo's, Specialists, functional med docs and others. Nothing helps. Properly tried a number of possible supplements/vitamins, on and off testosterone replacement (which I've been on for a long time). Thyroid labs consistently in the good range, varying thyroid dose does not help.

low dose naltrexone (helped for about a week)
amitriptyline (supposedly helps energy levels, no help, made me sleep 12 hours/day)
prednisone (helps immensely, don't think I can survive without it)
blood pres meds (no help)
cholesterol meds (no help)
D vitamins (no help)
B vitamins (no help)
Magnesium (no help)

I've tried just about every supplement available.

Unfortunately, I'm just getting slowly worse. Nothing seems to provide a restoration of sufficient energy for normal tasks.

RNP antibodies remain around 9, TPO antibodies about 950 and Tg by memory about 85.

 

[Lovlkn]

what did your latest thyroid labs and ranges look like?

 

[cujet]

what did your latest thyroid labs and ranges look like?

Everything is normal, with T4 being mid range and free T3 in the upper 1/3rd of lab ranges. Been at this for a long time now. Adjustments up or down do not help. The only thing that helps is prednisone.

 

[cujet]

May 2022 update

Significant success!

I'm now taking T3, and prednisone. The elimination of T4 seems to have been the right step, as now I can manage my thyroid levels myself, by feel, quickly. Without that horrible fatigue.

I take:
12mg T3, 6x per day
10mg Pred 1x per day.

To exercise, I take an additional 6mg T3 and 5mg Pred. (the extra is necessary to avoid depletion and loss of energy, a horrible crash)

To say I'm excited is an understatement. I'm thrilled to be back in the world of the living. Able to exercise and perform daily tasks. Not only am I now able to stand up, climb stairs and so on, I can get on the bicycle and my legs make some power. Sure, I'm horribly outa shape. That will change. I'm alternating between 20 mile bicycle rides and weightlifting at the gym. A bit more than 1 month in now and getting better every day.

I'm Thrilled.