Dr. Hive: Medical Mystery. Feeling worse after beginning therapy.

[KidsHappen]

Sorry this is a bit of a long story but hoping maybe others (maybe @Jean in Newcastle ) have  went through something like this and could offer advice.

I have had severe fibromyalgia for a very long time. I also have severe back pain that is treated by ER long term opioid therapy. I also used to take a prescription strength NSAID as well. Two years ago I went to the doctor because I was so weak and tired that I was practically bedridden. It turned out that my hemoglobin was less than 6 and my hematocrit was about 13. So I had a colonoscopy and endoscopy. They found a small ulcer that they thought perhaps had bleeding for a long time and maybe my body was not replacing my blood fast enough to prevent this from being a problem. (I have been menopausal for years now) So anyhow, I got meds and intensive iron treatment and finally got my numbers back up to normal. 

The following summer my numbers dropped again and this time they really couldn't find a reason for it. So we once more did intensive iron treatment and got my numbers back up. Then at the beginning of this year I was once again feeling so weak and fatigued that I was once again bedridden. This time they found that my hemoglobin was around 10 but my hematocrit was still just 13. We haven't really got to the bottom of this yet but at this point we decided to do some additional testing. WE found that all of my hormones were bottomed out and my cortisol measurement was practically non existent. 

I also have arthritis and a torn rotator cuff in one shoulder to the point where I can really use that arm right now. That's not really related by is contributing to the pain and difficulties functioning. And finally, I have some problem with my esophagus where it closes and I can't swallow anything. I sometimes even have difficulty swallowing liquids. I have had it dilated three times already and need to have it done again. I am wondering if I am having some sort of digestive tract issue that is causing lose of blood and trouble absorbing nutrients. My gastroenterologist is planning to check for Crohn's and Celiacs the next time I have an endo/colonoscopy. 

So now I am taking estrogen, progesterone, testosterone, DHEA, desiccated adrenal glands, herbal adrenal support, mega vitamins, prescription iron, and a few other things. Anyway, I started all of this massive therapy about a week ago and I am actually feeling worse. I am literally sleeping maybe 14 hours a day (which is actually great because it has been years since I got such good quality sleep) and I am still spending most of the day in bed. I am up maybe four or five hours a day and when I am up I am really not able to do much more than sit in a chair.

To let you know how much all of this has really affected me over the last few years, all of my grandchildren live in Atlanta and I used to visit them for two or three weeks at a time about every other month. I lived for this. I am very close to all of them and it is very important to me to maintain the bonds with them. Unfortunately, I have had to cut the last few visits short because I was just so weak and tired. I am no longer able to make the trips myself and I am not able to make them as frequently as I used to. 

Has anyone else ever gone through something like this? If so what were your experiences? Is there some medical condition that would cause everything to be so low like this? Any recommendations or advice? I would be extremely grateful for any ideas or help. TIA

@arctic mom - someone suggested you might have some input and it would definitely be welcome. 

Edited April 22, 2019 by KidsHappen
To ping Arctic Mama

[Rosie_0801]

I don't know, but I care for my mother who is bedridden with fibromyalgia, so I feel for you. ❤️

Could the sleeping just be your body trying to use the new ingredients it has to heal up a bit?

[Acadie]

Low iron, leaky gut and arthritis issues in my family are related to oxalate issues, and a low oxalate diet makes a huge difference. We've also had low D with a genetic component. D3 supplements have helped, but it's possible that the low oxalate diet was a factor as well. For more info you could join the FB group Trying Low Oxalates.

Just throwing this out in case it might help you. There could be other causes for what you're seeing.

In any case, I really hope you find some answers and feel better.

Amy  

Edited April 18, 2019 by Acadie

[KidsHappen]

59 minutes ago, Rosie_0801 said:

I don't know, but I care for my mother who is bedridden with fibromyalgia, so I feel for you. ❤️

Could the sleeping just be your body trying to use the new ingredients it has to heal up a bit?

That's what I am hoping.

[KidsHappen]

52 minutes ago, Acadie said:

Low iron, leaky gut and arthritis issues in my family are related to oxalate issues, and a low oxalate diet makes a huge difference. We've also had low D with a genetic component. D3 supplements have helped, but it's possible that the low oxalate diet was a factor as well. For more info you could join the FB group Trying Low Oxalates.

Just throwing this out in case it might help you. There could be other causes for what you're seeing.

In any case, I really hope you find some answers and feel better.

Amy  

I have never heard of this so I will look into it. Thanks. 

[BeachGal]

Did they test you for H. pylori? Breath and stool tests are more accurate than blood.

It sounds like they need to get to the root cause of your digestive issues. That is probably causing or contributing to your other problems.

In Israel at Tel Aviv University, they are using hyperbaric oxygen therapy (hbot) to treat fibromyalgia. The researcher’s name is Prof. Shai  Efrati.  He has done a number of studies using hbot. Spain and I think Italy have also begun similar studies, IIRC. Pages 39-40 of the 1st link have a quick summary and the rest has more details. The second link is a shorter abstract of the same study that you could print out and discuss with your doctor if you wanted to do so.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4444341/

https://www.ncbi.nlm.nih.gov/pubmed/26010952

 

[KidsHappen]

3 minutes ago, BeachGal said:

Did they test you for H. pylori? Breath and stool tests are more accurate than blood.

It sounds like they need to get to the root cause of your digestive issues. That is probably causing or contributing to your other problems.

In Israel at Tel Aviv University, they are using hyperbaric oxygen therapy (hbot) to treat fibromyalgia. The researcher’s name is Prof. Shai  Efrati.  He has done a number of studies using hbot. Spain and I think Italy have also begun similar studies, IIRC. Pages 39-40 of the 1st link have a quick summary and the rest has more details. The second link is a shorter abstract of the same study that you could print out and discuss with your doctor if you wanted to do so.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4444341/

https://www.ncbi.nlm.nih.gov/pubmed/26010952

 

They did test for H. pylori and it was negative. They think the ulcer was caused by the NSAIDs and so they took me off of those and told me not to take any of that class. 

My dd just suggested Hyperbaric Oxygen Therapy so I guess I need to research that and talk to my doctor about it. Thanks for the links.

[prairiewindmomma]

Ping ArcticMama.  She is the guru on adrenals on the board.

I'd be eating my bread and pushing to have my scope done to rule out Crohn's and celiac disease.  Your story mirrors that of a few close friends of mine. 1 had Crohn's. 5 had celiac. 

If your gut isn't absorbing vitamins right now (and it sounds like it's not with your d and b and iron levels), what you're putting in via supplements likely isn't helping much.

FWIW, and this isn't directly on point, but I have been severely anemic.....prescription oral iron tablets do nothing for me.  Chugging Floradix liquid and chasing it with orange juice to boost absorption pulled me out of transfusion territory. My body absorbs it much better. Do you know what your hemoglobin is right now? Like, this week or the last? I wouldn't be waiting weeks to go back to the doctor to have it checked if you don't know.

[Shoeless]

I am suspicious of Celiac, as well. 

Have your doctors evaluated your thyroid?  Hashimoto's and Celiac often buddy up and cause these issues.

[KidsHappen]

On 4/17/2019 at 9:58 PM, prairiewindmomma said:

Ping ArcticMama.  She is the guru on adrenals on the board.

I'd be eating my bread and pushing to have my scope done to rule out Crohn's and celiac disease.  Your story mirrors that of a few close friends of mine. 1 had Crohn's. 5 had celiac. 

If your gut isn't absorbing vitamins right now (and it sounds like it's not with your d and b and iron levels), what you're putting in via supplements likely isn't helping much.

FWIW, and this isn't directly on point, but I have been severely anemic.....prescription oral iron tablets do nothing for me.  Chugging Floradix liquid and chasing it with orange juice to boost absorption pulled me out of transfusion territory. My body absorbs it much better. Do you know what your hemoglobin is right now? Like, this week or the last? I wouldn't be waiting weeks to go back to the doctor to have it checked if you don't know.

Floradix and OJ is what we used to pull me out of transfusion territory as well. High doses of prescription iron after that seemed to keep my iron up but is really rough on my digestive system. Everytime I stop taking it my iron drops which is what happened the last time I went in and my count was 13. I am once again taking the iron and massive amounts of C to help absorption. I am due to go in again soon to get it rechecked. They are trying to give it a little time for the iron to take affect. I do think that I must be absorbing most of the vitamins because my urine is pretty clear instead of bright yellow like it usually is when you take too many vitamins. 

I have to wait a little on the next scope because we have an HSA instead of a FSA so I have to wait until I have enough money in my account to get more work done. It would be better if this had happened later in the year because we hit our out of pocket max every year and then I don't have to worry about the cost any more. 

I will message Artic Mama. Thanks/

Edited April 22, 2019 by KidsHappen

[KidsHappen]

34 minutes ago, MissLemon said:

I am suspicious of Celiac, as well. 

Have your doctors evaluated your thyroid?  Hashimoto's and Celiac often buddy up and cause these issues.

They check my thyroid (complete panel) everytime they take blood and surprisingly my thyroid is the only thing measuring ok. 

[Jean in Newcastle]

I immediately thought of Celiac disease.   Have them do a ttg blood test  Do not go off of gluten before the test  

As far as feeling worse- you are taking a lot of hormones. I personally can’t handle DHEA at all. 

[KidsHappen]

23 minutes ago, Jean in Newcastle said:

I immediately thought of Celiac disease.   Have them do a ttg blood test  Do not go off of gluten before the test  

As far as feeling worse- you are taking a lot of hormones. I personally can’t handle DHEA at all. 

Could you elaborate on what problems you have with DHEA?

[Jean in Newcastle]

2 minutes ago, KidsHappen said:

Could you elaborate on what problems you have with DHEA?

Shoots my bloodsugars sky high for one thing. Plus I can’t sleep when I take it. 

[Chris in VA]

The first thing I thought of,unfortunately was MS. Have you been evaluated for multiple sclerosis? The pain, trouble swallowing, fatigue...I know this is a long shot. Symptoms can come and go. Low iron and poor absorption of nutrients could be a co-existing condition. Just a thought (and not a happy one, sorry.) (((Kids)))

[KidsHappen]

1 hour ago, Chris in VA said:

The first thing I thought of,unfortunately was MS. Have you been evaluated for multiple sclerosis? The pain, trouble swallowing, fatigue...I know this is a long shot. Symptoms can come and go. Low iron and poor absorption of nutrients could be a co-existing condition. Just a thought (and not a happy one, sorry.) (((Kids)))

MS was an early consideration but they have ruled that out. 

[Chris in VA]

2 hours ago, KidsHappen said:

MS was an early consideration but they have ruled that out. 

I'm so glad to hear that. 

[Jean in Newcastle]

I have larygneal and esophageal spasms.  Very painful.  Can't swallow water even.  It has gotten almost all better once I was taken off of gluten (after having the ttg tests). 

[Pen]

Is there any chance you could have Lyme Disease or another tick born illness (on top of whatever else has been going on)?

Is your heart function normal? 

Is your potassium balance normal?

How is your B12?

what form of vitamin D did you get, how much, and K2 to go with it? 

It sounds like you could have several things going on at once.  

If your main goal is diagnosis, I’d try to get your tests for Celiac and Crohn’s very soon so you can keep eating gluten now. And then stop after the tests.   If your main goal is feeling better ASAP, you might want to go off grains especially gluten ones now, and try a mitochondrial supportive diet, such as for CFS, or a healthy whole food based version of Keto  and see if that might help.  

Afaik, I don’t have celiac (never been tested) but do better gluten free / grain free at least for most of the time.  

You started a lot of things at same time, so it could be hard to know if any of them disagree with your system.   That could be a reason to feel worse now.  

I have CFS and at one point was found to have markedly low cortisol, but had worse reactions to adrenal treatment than the problem itself. Not necessarily specifically that, but something along those lines could be why you are feeling worse. The reason I think the adrenal treatment made things worse was it ramped up one part of system when other parts were not working, so it caused much worse wipe out overall.  Particularly since low cortisol for me was probably secondary, not a situation of having Addison’s Disease, where fixing that would have fixed everything.  

 

 

 

 

[Jean in Newcastle]

BTW - taking magnesium also helps with my larygeal/ esophageal spasms. 

[KidsHappen]

20 minutes ago, Jean in Newcastle said:

BTW - taking magnesium also helps with my larygeal/ esophageal spasms. 

I am taking magnesium and have been for a very long time. Neither of my doctors have ever mentioned that this could be related to gluten issues so I will definitely ask about this because this is a major issue for me especially with having to take all these d*mn pills now.

[Pen]

Dysphagia, trouble swallowing is also common with Lyme, CFS, and a number of other currently common conditions.  

 

[KidsHappen]

4 hours ago, Pen said:

Is there any chance you could have Lyme Disease or another tick born illness (on top of whatever else has been going on)?

Is your heart function normal? 

Is your potassium balance normal?

How is your B12?

what form of vitamin D did you get, how much, and K2 to go with it? 

It sounds like you could have several things going on at once.  

If your main goal is diagnosis, I’d try to get your tests for Celiac and Crohn’s very soon so you can keep eating gluten now. And then stop after the tests.   If your main goal is feeling better ASAP, you might want to go off grains especially gluten ones now, and try a mitochondrial supportive diet, such as for CFS, or a healthy whole food based version of Keto  and see if that might help.  

Afaik, I don’t have celiac (never been tested) but do better gluten free / grain free at least for most of the time.  

You started a lot of things at same time, so it could be hard to know if any of them disagree with your system.   That could be a reason to feel worse now.  

I have CFS and at one point was found to have markedly low cortisol, but had worse reactions to adrenal treatment than the problem itself. Not necessarily specifically that, but something along those lines could be why you are feeling worse. The reason I think the adrenal treatment made things worse was it ramped up one part of system when other parts were not working, so it caused much worse wipe out overall.  Particularly since low cortisol for me was probably secondary, not a situation of having Addison’s Disease, where fixing that would have fixed everything.  

 

 

 

 

Tick borne illnesses seem unlikely because I rarely ever go places where ticks would be and I can't ever remember having a tick.

I have had a complete heart work up due to family history and chest pain and it was normal. I did have low potassium at that time which they treated. 

B12 is low right now but not low enough to do shots. They will consider that if I am not able to bring it up with oral vitamins.

I am taking D3 and no one has ever mentioned K2.

I will get my next scope as soon as I can.

I am currently not really eating much food at all what with trouble swallowing and having nausea from all the different meds I am taking.

I am concerned about low cortisol and taking DHEA. I don't really know if this is a primary issue or a secondary issue. I am pretty sure my PCP will check for Addison's the next time I go in due to the low cortisol. 

I definitely feel like things are not in balance but I am not sure what the primary problem is.

[KidsHappen]

3 minutes ago, Pen said:

Dysphagia, trouble swallowing is also common with Lyme, CFS, and a number of other currently common conditions.  

 

Do you know if it is common with fibromyalgia?

[Pen]

Googled yah:

Oral Burning With Dysphagia and Weight Loss - ...

 

---

by TM Seccia · 2015 · Cited by 1 · Related articles

Aug 7, 2015 · Fibromyalgia was also found to be commonly associated with esophageal motility disorders,6nausea, and/or dyspepsia. ... In conclusion, odynophagia, dysphagia, and glossodynia can be the prevalent symptoms at presentation of fibromyalgia patients although often overlooked.

Abstract

 

 

[Pen]

I’ve found it easier to take supplements with a thicker substance like kefir than with water  ymmv

also a lot of supplements cause nausea if not taken with food

[Pen]

12 minutes ago, KidsHappen said:

Tick borne illnesses seem unlikely because I rarely ever go places where ticks would be and I can't ever remember having a tick.

I have had a complete heart work up due to family history and chest pain and it was normal.

Good 

12 minutes ago, KidsHappen said:

I did have low potassium at that time which they treated. 

B12 is low right now but not low enough to do shots. They will consider that if I am not able to bring it up with oral vitamins.

Is there a danger in having a B12 shot to see if it could help sooner rather than later?

12 minutes ago, KidsHappen said:

 

I am taking D3 and no one has ever mentioned K2.

 

See below

12 minutes ago, KidsHappen said:

I will get my next scope as soon as I can.

Good

12 minutes ago, KidsHappen said:

 

I am currently not really eating much food at all what with trouble swallowing and having nausea from all the different meds I am taking.

Not good.  

12 minutes ago, KidsHappen said:

I am concerned about low cortisol and taking DHEA. I don't really know if this is a primary issue or a secondary issue. I am pretty sure my PCP will check for Addison's the next time I go in due to the low cortisol. 

I definitely feel like things are not in balance but I am not sure what the primary problem is.

 

K2 helps the D go where it needs to be and calcium to go (stay) where it should be.  

 

Low potassium can cause a lot of fatigue.  Could be you got low again?  Especially if not eating well/absorbing well?

 I use quite a lot of sublingual B12.  In addition to other B vitamins.  I don’t think I absorb it well.  

It seems like an endocrinologist might be helpful in regards all the hormonal issues.  Not just a pcp, unless your pcp is fabulous.  

[caedmyn]

Go to www.stopthethyroidmadness.com and look at their recommendations for dealing with adrenal fatigue.  They’ve been very helpful for me.  If your cortisol levels are very low you’re going to want to take Cortef (oral hydrocortisone).  Adrenal glandulars and herbal supplements aren’t going to cut it (btdt).  STTM has dosing suggestions and Fb groups that can help.  It’s been a while since I researched this stuff but iirc you want to work on adrenals first and sex hormones second.  Supplementing with dhea is a bit of a wildcard iirc...seems like there are different hormones that it can be converted into, and it may be converting into something that’s not helping you.  I’d also recommend checking your thyroid lab values against the “optimal” ones on the STTM website, as they may actually be less-than-ideal even if your dr. thinks they’re fine.  Mine were all within range except antibodies were just slightly high.  Dr. said oh you might have Hashi’s but your body is compensating ok...no, I had full-blown Hashi’s and felt like crap.

[Shoeless]

23 hours ago, KidsHappen said:

They check my thyroid (complete panel) everytime they take blood and surprisingly my thyroid is the only thing measuring ok. 

They did T3/T4, Free T4, TSH, thyroid antibodies, all of it?  Or did they just test TSH?

The reason I ask is because dysphagia/trouble swallowing was the first hint that I had Hashimoto's Disease.  My T4 was low normal, my TSH was moderately elevated, and my thyroid antibodies were sky high.  Vitamin D was low, too.  I felt like garbage 24/7.  

[KidsHappen]

1 minute ago, MissLemon said:

They did T3/T4, Free T4, TSH, thyroid antibodies, all of it?  Or did they just test TSH?

The reason I ask is because dysphagia/trouble swallowing was the first hint that I had Hashimoto's Disease.  My T4 was low normal, my TSH was moderately elevated, and my thyroid antibodies were sky high.  Vitamin D was low, too.  I felt like garbage 24/7.  

Yes, all of it, many, many times; like a couple times a year for several years, It was the very first thing they thought of and for the longest time they thought that had to be it but I am not even borderline but well within normal ranges. My doctor even thought I had a slightly swollen thyroid and I had, either x-rays or a U/S which was also normal.

My doctors seem to think that the severe anemia and esophagus issues (being dealt with by my gastroenterologist) are one thing, the cortisol and hormones are another issue and they haven't even really seriously addressed the low vitamin issues accept maybe malnutrition due to the fact that I really am not eating much at all OR maybe it is all related to fibromyalgia.

When they did my first endo about five years ago they did not see any signs of Crohn's or celiacs and they doesn't appear to be any obvious loss of blood digestively on a regular basis to explain such severe anemia so that doesn't even make sense to me but they want to check that again before considering other possibilities for that. 

The hormones are low even for a menopausal woman but that may have something to do with the cortisol, IDK?

I just know I have been dealing with this for a very long time now and I am just exhausted and in constant pain. 

[KidsHappen]

5 hours ago, caedmyn said:

Go to www.stopthethyroidmadness.com and look at their recommendations for dealing with adrenal fatigue.  They’ve been very helpful for me.  If your cortisol levels are very low you’re going to want to take Cortef (oral hydrocortisone).  Adrenal glandulars and herbal supplements aren’t going to cut it (btdt).  STTM has dosing suggestions and Fb groups that can help.  It’s been a while since I researched this stuff but iirc you want to work on adrenals first and sex hormones second.  Supplementing with dhea is a bit of a wildcard iirc...seems like there are different hormones that it can be converted into, and it may be converting into something that’s not helping you.  I’d also recommend checking your thyroid lab values against the “optimal” ones on the STTM website, as they may actually be less-than-ideal even if your dr. thinks they’re fine.  Mine were all within range except antibodies were just slightly high.  Dr. said oh you might have Hashi’s but your body is compensating ok...no, I had full-blown Hashi’s and felt like crap.

Thanks so much for this info. I have been checking that out for the last few hours and it's a bit confusing. I think I am going to need my doctors help figuring out if any of this is applicable. I will probably print some of it out and take it in to ask questions. It seems to imply that there is definitely some thyroid issue going on and that is the one thing they are sure is not the case (see reply to MissLemon below). Maybe I will press him on this issue again.

[KidsHappen]

7 hours ago, Pen said:

Good 

Is there a danger in having a B12 shot to see if it could help sooner rather than later?

See below

Good

Not good.  

 

K2 helps the D go where it needs to be and calcium to go (stay) where it should be.  

 

Low potassium can cause a lot of fatigue.  Could be you got low again?  Especially if not eating well/absorbing well?

 I use quite a lot of sublingual B12.  In addition to other B vitamins.  I don’t think I absorb it well.  

It seems like an endocrinologist might be helpful in regards all the hormonal issues.  Not just a pcp, unless your pcp is fabulous.  

My PCP is great and I have been with him for 16 years but I will ask him if maybe I need a referral.  

[ktgrok]

Could you feel so tired simply because you aren't eating?

Also, you can do a blood test for celiac. it isn't a firm diagnosis but gives you a good idea of if it is a possibility. Not as expensive as the scope, and you could do it asap. And that they didn't see anything visually on the previous scopes means NOTHING. My son was anemic, low D, etc from his celiac disease but to the naked eye his intestines looked great when they scoped him, no signs of inflammation at all. Only the biopsies showed the problem. The damage can be microscopic. Oh, and there was damage in only one of the six biopsies. Had she missed that spot we wouldn't have found it, and yet even with that low level of disease he was nutritionally compromised.