Fatigue

[COwithAMN]

I am well aware that many AMN-ers suffer from extreme fatigue, especially the ladies among us. Recent postings have focused on it.

All this discussion made me think about levothyroxine. I’ve been taking this for years ever since hypothyroidism was diagnosed after a routine blood test. I looked at the paper insert to the tablets I just re-ordered, and tiredness, along with weight gain and constipation are all listed as common side-effects of hypothyroidism. Hypothyroidism is not linked as far as I know to AMN.

It made me wonder why hypothyroidism has never come up among discussions here about fatigue. Has anyone here who suffers from extreme tiredness also been tested for hypothyroidism? Is it possible that it could be contributor to the fatigue you experience?

I am not in any way suggesting that your fatigue is not due to AMN, I am just curious.

Chris

[jolocny Volunteer]

Hello Chris!

I’ve had hypothyroidism for 40 years now and take levothyroxine for it. I’m tested twice a year to be sure my levels are within range with my current med level. Because of this, and the change in my fatigue since I tested positively for AMN, I think my fatigue levels are due to AMN.

This didn’t come up in the conversation... I’m glad you brought it to us to consider thyroid testing.

Best, JoAnn

[Catrick]

Hi Chris,

In France I routinely have blood tests done every year and they check my thyroid which is fine. I'd hope that whenever patients have a blood test that the thyroid is checked as a matter of routine.

Its certainly worth checking in case its an issue that contributes to fatigue.

Best wishes, C

[Hillary]

I often wonder if I have symptoms. I have a family history, my mum and sister both have/had hypothyroidism. My GP will do bloods if I ask but I’m not on routine testing.

[Equinney]

My endocrinologist did a full thyroid blood work up and an ultrasound. He was concerned about the possibility of thyroid problems. Thankfully he found nothing wrong for once.

[Cherie]

Hi Chris I have had my thyroid checked by my endocrinologist and all was fine. I was low on B12 many years ago and so was also checked, but that is ok as well.

[dryder]

I have been tested and do have the condition. Neurologist does think it could be because of AMN but without further research, not sure, because this is a “common “ condition for people without AMN. He does have a lot of us women with AMN that have the condition. I personally am feeling extreme fatigue during this outbreak and causing me to feel anxiety more than normal.

[tieaknot]

I know this sounds crazy but I can “feel” when my thyroid is swinging one way or another. After I had my daughter 13 years ago I had a bout of thyroiditis where I became very HYPERthyroid for a few months (it was actually great! I didn’t need much sleep, I had energy, I lost weight not matter how much I ate, but I would sweat like crazy and had severe heart palpitations.) Labs came back very very low tsh, and super high thyroid antibodies basically meaning Hashimotos. So we waited to see if it would swing back to normal (as it often does after a pregnancy trigger) and it did. I’ve had it checked so many times but always normal range now (I’ll always have the antibodies but those levels go up and down still) and I can feel when my thyroid might be “moving to slower hypo” or swinging back to “hyper” by my symptoms (but always up and down within the “normal” ranges). One doc believes me, others think I’m nuts. But heart palpitations, insomnia, sweating and quick weight loss vs. fast weight gain, sudden hair loss and super dry skin and exhaustion are pretty obvious to me anyway. I’ll just keep riding the wave until it totally burns out my thyroid and I don’t swing back I guess.

[StevenSims]

Hi Chris,

I just read this:

People with Addison's disease often have an underactive thyroid gland (hypothyroidism), where the thyroid gland does not produce enough hormones.

Adrenal failure is linked to AMN perhaps it does effect the thyroid also?

I think you should see a endocrinologist ?

All the best

Steve

[COwithAMN Administrator AMN EASIER Volunteer in reply to StevenSims]

Thanks Steven, will look into this or a least mention to Queen's Square when I see them - whenever that is!

[SongStream]

Thyroid-Stimulating Hormone (TSH) Test is included in my blood work and requested by my endocrinologist. He also checks my thyroid during my clinical exam.

[fmorgan458]

Just saw this post. For the record: Addisons at age 14, neuro dysfunction starting to present at age 25, Hypothyroidism age 48. Am now 63 and still working a desk job. Use a wheelchair. Definitely battle fatigue and don't think it's related to the endocrine system in my case. Would like to know what others take or do who have AMN or ALS or MS that have helped.

[easygoin1 in reply to fmorgan458]

Hello fmorgan458,I have found that the way that works for me to battle the extreme fatigue is to get more sleep at night. I have been using a marijuana product called Rick Simpson Oil for a while to enable getting to sleep quicker and easier and staying asleep longer. I am fortunate that I live in Canada, where it has been legalized. I am also blessed to have been with my employer for a lot of years and have Long Term Disability through them so I don't have to be up early and can give myself the extra time in bed needed. I still go in a couple of hours a day and they are happy to have any time from me that I can still give.I have AMN and Addison's. my Addison's was diagnosed at 23 and AMN found a few years after that in my brother and I by our Endocrinologist. I will be 55 this month and have been on disability for the neuro dysfunction since 2013, but still get around with cane and walker. The walker use has pretty much increased to the point of all the time indoor and outdoor and the cane is just to get me by when getting to my walker in whatever situation.

Sorry for the ramble! I hope that you might find something useful in my rambling. There has never been a question about my Thyroid though, so I wonder if I should ask about it the next time I see the Endocrinologist.

Be well and have as great a day as is possible!!!

Jeff

[fmorgan458]

easygoin1 Thank you for sharing your story. I have never tried Mary Jane products although you can do that now in my state. As for getting to sleep and staying there I've got a few methods I use with my current meds and just common sense. I take Sertralene and Baclofen before bed. I also take Melatonin and if needed, Clonazepam. All items that when combined move the dial the right way. I took note of your encouragement about sleep. I am a chronic under sleeper and am working toward consistently getting more. The product you mentioned that's an oil, do you vape it? Is it CBD or MJ extract? Thanks!

[easygoin1 in reply to fmorgan458]

Hello fmorgan,It is actually more of a gel and it is a high THC product, I don't know what strain she uses to make it though. I take it internally. I have no sense of smell so don't notice the taste, but have been told that it tastes awful. I squeeze a dose from the syringe onto a chocolate covered almond and eat it that way. You do have to watch though because the amount needed increases as the body becomes accustomed so I need to take tolerance breaks occasionally and got a sleeping pill from my doc, but have found that it increases sweating at night and that isn't pleasant. I took Baclofen for a time but found it made me too sleepy during the day and this last time for trying it my Physiatrist started me really low and moved up slowly, but didn't see enough benefit with spasms or my walking to stay on it. I have also been looking into some CBD products that claim to help with neuropathy as well as helping joint pain etc. When I actually try something I will post the results.

Be well and have a great weekend!