Possible ME/CFS - lingering symptoms for years but now sudden unbearable fatigue - What to do?

[Crux]

No, I haven't been tested - I'll look into this - thanks! Though I think my phosphorous issues stem from refeeding syndrome related to thiamine - that's when I first had symptoms of low phosphorous. See this post above.

Thanks so much, I will too , then we'll both feel better !

 

[Replenished]

yes, that seems a bit strange to me! I just read that watermelon is high in potassium, so maybe it's too much potassium in relation to magnesium? I'm just guessing. Have you had an RBC magnesium test? This measures magnesium that's inside the cells as opposed to serum.

I've had magnesium serum which is on the blood tests I just posted but haven't had RBC magnesium. I may get that.
What form of magnesium is seen as best to take? I do take magnesium but not consistently because again I don't think i've noticed any benefit.

 

[lenora]

Hmm.....Another thought (and it's only that) is: Do you suffer from allergies at all? I'm asking because most meds for allergies can make the mouth extremely dry after a certain period of time. I mean dry as in you're going to have dental issues because the mouth needs saliva

Many of us have more than one condition we're dealing with, and then some of us have multiple conditions that each have their own symptoms. We're often surprised when this occurs.

I've suffered from odd smells since childhood. You can buy anti-bacterial liquids like Hibiclens (in the U.S.) over the counter. I use that after a deodorant soap and also use it on my feet. You can also get a prescription from your Dr. and that will help considerably (deodorant).

If the smell is originating in your mouth, then a visit to your dentist for thorough x-rays for signs of decay is essential. I spend a lot of time and money on my teeth....you're young but as you get older it's a necessity. It's also possible that a former dentist put a crown over a tooth that still had decay under it....thus the need for x-rays.

Are you regularly tested for diabetes? It's important, very important to not fall into the trap of not being regularly tested. When we're seeing specialists it's often easy for something more common to be overlooked. I also have an internist who is a specialist in older people. She catches many things that others have missed....and often saves me from trips to see a specialist.

I've used meditation and particularly breathing exercises for years (I also have treated anxiety), but still need the extra help. A suggestion that was good came from a physical therapist I was seeing a while ago....and that was to walk as far as I could each day. Not for a mile, but for example, start with 2 houses, then 3, well you get the idea. It's not overwhelming and we can increase it at our own pace. I need to start doing that again myself and will. Big difference between a thorough work-out and just walking at a gentle pace to start. Good luck in finding out the source(s) of your problem. Glad to have you. Yours, Lenora.

 

[Crux]

I've had other tests outside of this but this is the most comprehensive blood test I've had in the past year.

View attachment 46116View attachment 46117View attachment 46118

Wow, what thorough testing. You're exhausted and determined, very much in common with ME/CFS people.

I noticed that calcium is creeping up to high normal. Phosphorus is ok. Perhaps the magnesium @Mary suggested will help counterbalance the calcium.

I can't help but suspect that there is some liver stress. My cholesterol is high too.
An unusual thing I learned about choline deficiency is that, when it is low, VLDL can also be low. The test considers 0 to be normal , but VLDL has a purpose.
I started taking choline again because it's sometimes difficult to get the recommended amount.

 

[Mary]

I've had other tests outside of this but this is the most comprehensive blood test I've had in the past year.

View attachment 46116View attachment 46117View attachment 46118

Your calcium/phosphorous ratio is 2.11, According to the chart it should be no more than 2.09, which I think means your calcium is a bit too high in relation to your phosphorous. The top number for calcium on the chart is 2.50 and yours is 2.49. So your phosphorous may be a bit low - it might be worth asking your doctor about. Again, the whole issue of phosphorous came to mind because of your difficulty swallowing.

 

[caledonia]

Partial diabetes insipidus sounds like it's in the ballpark. I found this article which has some great info as to causes. There could be something upstream in the hypothalamus or pituitary causing it. Maybe you could email Thomas Wilson MD listed at the end article to get some ideas?

https://rarediseases.org/rare-diseases/central-diabetes-insipidus/

Here's a paper called Rare Association of Diabetes Insipidus with Autoimmune Thyroiditis https://abstracts.eurospe.org/hrp/0082/hrp0082p3-d3-649

I don't know what tests they used for your thyroid, but it's possible to have a normal TSH and high antibodies. They normally just test for TSH and declare that you're fine. It's best to do a complete thyroid panel, which is four tests. They did that in the study, and also an ultrasound.

In general, I feel that there is something going on with the HPAT axis (hypothalamus/pituitary/adrenals/thyroid).

 

[caledonia]

Here is a questionnaire for ME - do you fit this?
https://www.meadvocacy.org/the_international_consensus_criteria_what_is_it_do_i_fit_the_criteria

 

[Booble]

I have low blood pressure (except when at the doctor's office) and continuous thirst and fatigue too.
In the mornings, if I'm feeling particularly depleted, I take a bit of salt on my finger and run it under my tongue and then drink water.

I don't know if it's placebo effect or legit but since I started doing it on days where I'm feeling extra crappy and need to be "on" (phone meetings for work) it has really done the trick for me. Pretty quick acting as well.

 

[Booble]

Also -- "Water Fast" sounds like not drinking water. Isn't not eating food and only drinking water simply a fast?

 

[Replenished]

My Eosinophil has come back slightly low a couple of times recently. Low doesn't seem to be of any concern to then doctors but wondered if it might point towards anything?

Eosinophil count - observation (42K..) 0.07 10^9/L [0.1 - 0.4] - Below low reference limit

 

[Replenished]

Also -- "Water Fast" sounds like not drinking water. Isn't not eating food and only drinking water simply a fast?

I didn't create the name . In the fasting world, "water fasting" or "water only fasting" is no food/calories only water. A "dry fast" is no food and no water. But yes I agree and understand a "water fast" sounds like abstaining from water!

 

[lenora]

Partial diabetes insipidus sounds like it's in the ballpark. I found this article which has some great info as to causes. There could be something upstream in the hypothalamus or pituitary causing it. Maybe you could email Thomas Wilson MD listed at the end article to get some ideas?

https://rarediseases.org/rare-diseases/central-diabetes-insipidus/

Here's a paper called Rare Association of Diabetes Insipidus with Autoimmune Thyroiditis https://abstracts.eurospe.org/hrp/0082/hrp0082p3-d3-649

I don't know what tests they used for your thyroid, but it's possible to have a normal TSH and high antibodies. They normally just test for TSH and declare that you're fine. It's best to do a complete thyroid panel, which is four tests. They did that in the study, and also an ultrasound.

In general, I feel that there is something going on with the HPAT axis (hypothalamus/pituitary/adrenals/thyroid).

Hello @caledonia.....Interesting reading about diabetes insipidus and the pituitary connection.

I'm female, now 74, and had a problem with a pituitary tumor (first diagnosis as a matter of fact) approx. 40 yrs. ago. I was put on a drug called Bromocriptine for approx. 6 years (can't remember exactly). This did take care of the problem. It certainly does sound like @Replenished does have some problem with the HPAT axis.
Like I said, informative reading.

As it turned out, the pituitary was the least of my problems. Still, in the case of @Replenished it does sound like there is some glitch. I would definitely have all of the special tests required (if they still are used even) and an endocrinologist is probably the best specialist to see for this requirement. (In addition to blood tests.) The MRI hadn't even been introduced at the time of my diagnosis, so perhaps that's used now.

In my case, the pituitary problem was solved and I went on to other larger congenital abnormalities. Thanks for submitting such interesting reading.

Out of interest, a few years ago I was hospitalized and diagnosed with autoimmune encephalitis caused by too much water. One can go a little crazy with these diagnoses at times. I notice that too much water isn't even mentioned as as a possible factor in the cause of this relatively rare and unknown illness...the AE. I also developed epilepsy (two different types of seizures) at about the same time.

I'm not surprised by anything happening at this point (and there have been many other major disorders). It's as if one reaches a saturation point and can't absorb anymore. That's why we need a family member, friend or nurse to help us.

Out of interest @Booble.....I have also found salt to be a quick pick-me-up for a short period of time. We have many unknown illnesses....so many are idiopathic. Wishing all of you well. Yours, Lenora.

 

[Replenished]

Hmm.....Another thought (and it's only that) is: Do you suffer from allergies at all? I'm asking because most meds for allergies can make the mouth extremely dry after a certain period of time. I mean dry as in you're going to have dental issues because the mouth needs saliva

Many of us have more than one condition we're dealing with, and then some of us have multiple conditions that each have their own symptoms. We're often surprised when this occurs.

I've suffered from odd smells since childhood. You can buy anti-bacterial liquids like Hibiclens (in the U.S.) over the counter. I use that after a deodorant soap and also use it on my feet. You can also get a prescription from your Dr. and that will help considerably (deodorant).

If the smell is originating in your mouth, then a visit to your dentist for thorough x-rays for signs of decay is essential. I spend a lot of time and money on my teeth....you're young but as you get older it's a necessity. It's also possible that a former dentist put a crown over a tooth that still had decay under it....thus the need for x-rays.

Are you regularly tested for diabetes? It's important, very important to not fall into the trap of not being regularly tested. When we're seeing specialists it's often easy for something more common to be overlooked. I also have an internist who is a specialist in older people. She catches many things that others have missed....and often saves me from trips to see a specialist.

I've used meditation and particularly breathing exercises for years (I also have treated anxiety), but still need the extra help. A suggestion that was good came from a physical therapist I was seeing a while ago....and that was to walk as far as I could each day. Not for a mile, but for example, start with 2 houses, then 3, well you get the idea. It's not overwhelming and we can increase it at our own pace. I need to start doing that again myself and will. Big difference between a thorough work-out and just walking at a gentle pace to start. Good luck in finding out the source(s) of your problem. Glad to have you. Yours, Lenora.

Thanks Lanora, and thanks for your post on the first page of this thread which i'm sure wasn't showing up originally and I've just seen it!

Do I have allergies...I get mild hayfever, and I would say intolerant to gluten but that's about it and I don't take medications/antihistamines etc so that couldn't be the cause of the dry mouth.

The smell isn't originating from my mouth. I'm sure of that. Yes I'm tested regularly for diabetes, always nowhere near having it.

Thanks for the suggestions on walking. I've been a bit better the past few days in terms of less fatigue. So have have one or two walks. I also am trying to meditate regularly and need to stick to that!

 

[Replenished]

Partial diabetes insipidus sounds like it's in the ballpark. I found this article which has some great info as to causes. There could be something upstream in the hypothalamus or pituitary causing it. Maybe you could email Thomas Wilson MD listed at the end article to get some ideas?

https://rarediseases.org/rare-diseases/central-diabetes-insipidus/

Here's a paper called Rare Association of Diabetes Insipidus with Autoimmune Thyroiditis https://abstracts.eurospe.org/hrp/0082/hrp0082p3-d3-649

I don't know what tests they used for your thyroid, but it's possible to have a normal TSH and high antibodies. They normally just test for TSH and declare that you're fine. It's best to do a complete thyroid panel, which is four tests. They did that in the study, and also an ultrasound.

In general, I feel that there is something going on with the HPAT axis (hypothalamus/pituitary/adrenals/thyroid).

You are right on Partial DI being in the right ballpark. That's what I was initially provisionally diagnosed with. "Possible partial cranial diabetes insipidus", after two water deprivation tests demonstrated I was not concentrating urine normally, although I was not far off normal and they classed it as borderline. I was then tried on desmopressin which did increase urine concentration somewhat but never really improved the thirst or feeling depleted. I gave it a good go using various different doses and different forms but it never really helped. More recent testing via 'Hypertonic saline test' which is another test for Diabetes insipidus, demonstrated my vasopressin (copeptin) response to hyperosmolar stimulation (essentially mimicking dehydration) was normal. I'll attach the results of that test here. So it's come to a bit of a dead end of the Diabetes insipidus front, and it looks as though it's not that despite the symptoms being very similar.

I've had all thyroid tests, TSH, T4, T3, Antibodies they are all normal.

I agree there probably is some HPAT axis issue involved though. I've read of people having 'Autonomic nervous system dysfunction' which some believe to be the cause of ME/CFS and that in itself for many people causes issues with Vasopressin/ADH.

 

[Replenished]

Your calcium/phosphorous ratio is 2.11, According to the chart it should be no more than 2.09, which I think means your calcium is a bit too high in relation to your phosphorous. The top number for calcium on the chart is 2.50 and yours is 2.49. So your phosphorous may be a bit low - it might be worth asking your doctor about. Again, the whole issue of phosphorous came to mind because of your difficulty swallowing.

Not sure if you are in the UK but any regular doctor here wouldn't even entertain such a question about a calcium/phosphorous ratio that's slightly out of range. So I have to work that one of form myself with the help of you guys
In regards to the difficulty swallowing. It's a cartilage/misalignment issue that appears to be limiting the movement in there, something mechanical rather than an organic/muscle/neuro issue with swallowing. I'm still trying to get that one resolved but ENT don't want to operate because they can't work out exactly what's going on and say my swallow is 'safe' so that's all they really care about.

 

[Irat]

@Replenished ,i haven t read all the comments,so just ignore if this was already discussed

But for me some of your symptoms sounds like as classic adrenal fatigue aka HPA dysfunction,.have you done an Dutch test for this ? ACTH test ? And cortisol saliva test (wherease the saliva test hardly shows up the problem) if your interested in this more Dr .Joel Rosen on you tube is an absolute expert on HPA axis/adrenals

About the dehydration,I have this sometimes severely,no amount of water or electrolyte helps.first thing never drink water alone,always with a bit of lemon or cucumber that it better can get into the cells.or consider a saline IV.
Dehydration often is a hypothalamic problem.,which also regulates our sodium potassium levels

Pre diabetis also can be the same problem oxidative stress can cause high blood sugar,because when the body is under stress, the adrenal glands trigger the release of glucose stored in various organs, which often leads to elevated levels of glucose .....

High cholesterol is also due to oxidative stress and inflammation.its the body first repair response and antioxidant.

The problem with swallowing I have too and almost everyone in our MCS community ,it's called dysphagie and linked to many degenerative nervous system illnesses as well as to viral and bacterial infections,Mabey a vagus nerv problem ,but you said yours is mechanical ?what did they say what's the causes? One person I know has scarring which causes it .

What was the trigger which made you worse ? Stress,mold,medication,bad diet, an infection,surgery ,dental work, any change ?

 

[Booble]

I didn't create the name . In the fasting world, "water fasting" or "water only fasting" is no food/calories only water. A "dry fast" is no food and no water. But yes I agree and understand a "water fast" sounds like abstaining from water!

Yikes! A "dry fast" sounds ridiculously dangerous...and frankly....stupid!
No wonder they came up with a dumb names for their fasting. *grin

Just teasing.

I actually could do with a reverse fasting. A continual drip of food would be helpful!

 

[Mary]

It's a cartilage/misalignment issue that appears to be limiting the movement in there, something mechanical rather than an organic/muscle/neuro issue with swallowing.

Okay - I just didn't know if you were positive about this. My sister told her doctor a year ago she had trouble swallowing and he (or she) just shrugged (not uncommon!). So I didn't know if the cartilage issue was confirmed or a stab in the dark! But if you're positive, then no worries - and I hope you find a solution!

 

[Pyrrhus]

My main symptom for the past 5 years has been dehydration, frequent urination, dry mouth, which was thought to be Diabetes Insipidus and tests showed I may have a mild/partial form of this condition, yet the replacement hormone didn't help and it didn't quite stack up that this was the condition causing my symptoms.

Many people with ME have low levels of vasopressin/anti-diuretic hormone (ADH), which leads to the common phrase "people with ME/CFS drink like a fish and pee like a racehorse".

This has been suggested to be related to hypothalamic dysfunction:
https://forums.phoenixrising.me/threads/is-your-hypothalamus-up-the-creek.81181/

 

[lenora]

Not sure if you are in the UK but any regular doctor here wouldn't even entertain such a question about a calcium/phosphorous ratio that's slightly out of range. So I have to work that one of form myself with the help of you guys
In regards to the difficulty swallowing. It's a cartilage/misalignment issue that appears to be limiting the movement in there, something mechanical rather than an organic/muscle/neuro issue with swallowi
on and say my swallow is 'safe' so that's all they really care about.

Gosh, if the ENT guys don't want to operate, I would heed their advice. Surgery may correct some problems but then leaves you with others. I've had some rather tough ones, some areas were helped and others were made worse. Some areas build up incredible amounts of scar tissue....and that's simply no fun at all. Lifesaving is the only word that makes sense to me when it comes to surgery (but then you're still very young). Still....I'd talk to as many people who have had it as possible and find out the pitfalls.

Sure, you're told it can be removed, but what about the time after that, etc., etc.? If you can get help via therapy or swallowing exercises on your own, do it. I wish you much better health. Yours, Lenora.