OI/POTS and the menopause

[Invisible Woman]

I have had OI issues for years but in the last year or so these have become a real problem. I am not taking any meds for this just following the practical advice re fluids etc.

Coincidentally, the menopause is starting. I'm not taking meds for this either as although I have hot flushes, these are typical of the flushes I've been having since I first became ill 20 years ago.

So....I'm wondering if the worsening POTS is due to hormones and perhaps trying HRT might ease the POTS issue? Or should I try to address the POTS issues directly?

What do you think?

 

[dangermouse]

I'm experiencing similar. In same situation. I'm trying a menopause supplement from A Vogel to see if balancing my hormones helps.

Also having salt water and increasing fluids.

I'm having horrible nausea currently too.

 

[Misfit Toy]

So....I'm wondering if the worsening POTS is due to hormones and perhaps trying HRT might ease the POTS issue? Or should I try to address the POTS issues directly?

I went into menopause in April. Full on. FSH is so high and LH. Haven't had a period since. Since June, with the hot flashes and night sweats I can barely stand. It has to have something to do with adrenals. I never had full on POTS until April and May...the exact time this all got going. So, I would say yes.

My doctor who treats POTS has no clue if there is a correlation.

 

[Hanna]

I am joining the "party". Last period was in October. I began to experiment lots of autonomic nervous system disorders along with the hot flushes : sweats, chest pain and tachycardia with horrible nausea too.
I am struggling too with heavy POTS symptoms (I had to use the wheelchair inside, that didn't happen for a year !) since end of June, and began a PEM that I don't see the end now (those two last years I managed to reduce PEM to 2 days generally/ It has been now a full month and I still don't see the end of it).
It seems there is a link with menopause, doesn't it ?

 

[kangaSue]

I have had OI issues for years but in the last year or so these have become a real problem. I am not taking any meds for this just following the practical advice re fluids etc.

Coincidentally, the menopause is starting. I'm not taking meds for this either as although I have hot flushes, these are typical of the flushes I've been having since I first became ill 20 years ago.

So....I'm wondering if the worsening POTS is due to hormones and perhaps trying HRT might ease the POTS issue? Or should I try to address the POTS issues directly?

What do you think?

A lot of people with POTS also have Autonomic Neuropathy (AN). One issue in AN can be sudomotor dysfunction (inappropriate sweat response) which more commonly involves no, or very little sweating, but you can also have hot flush type sweats with this similar to those encountered in menopause.

 

[Invisible Woman]

A lot of people with POTS also have Autonomic Neuropathy (AN). One issue in AN can be sudomotor dysfunction (inappropriate sweat response) which more commonly involves no, or very little sweating, but you can also have hot flush type sweats with this similar to those encountered in menopause.

Thanks for that @kangaSue . I shall go look into that. Something else to learn about!

I think we should have a PR system of educational credits with the amount of stuff we have to learn from and teach each other!

 

[Mij]

I've been in menopause for a little over 3 years. I don't have POTS but have OI. I find the OI issue (feeling light headed and need to lie down) only bothers me just before the hot flash and then passes, so there could be a hormonal connection. I sweat like crazy and all my white sheets have yellowed.

I asked my doctor about HRT this past June and she said that I can try it but also informed me that it can increase the risk of uterine and breast cancer. Although I know HRT would improve my overall well being I'm not willing to risk it with my poor immune system.

I hope you find the answer.

 

[Learner1]

Its worth getting your hormones balanced, one less way to be miserable. I was thrown into menopause when my cancerous ovaries and uterus were removed, and immediately had significant symptoms. No fun.

After chemotherapy, once the dust settled, we worked on balancing my hormones.

Estradiol and Premarin (from pregnant mare's urine) promote female cancers and my oncologist wrote me a strongly worded letter discouraging my using them.

However, progesterone (I take the generic of Prometrium, the bioidentical version) is protective against my cancer, so I take a healthy dose of it.

And, after some diligent research, I found that topical estriol, the weaker estrogen, has never been shown to promote female cancers, so I use the tiniest amount of it. It helps cognitive function, skin elasticity, vaginal dryness, and bone health.

I also use topical testosterone cream, DHEA, and pregnenolone. (Pregnenolone and DHEA can be low in CFS.) Unfortunately, we've found I need all of them as they each have a job to do.

We use a DUTCH test to carefully monitor everything - it was quite helpful in fine tuning so I have no menopause symptoms now, only POTS. And my oncologist has calmed down - he sees in doing well and cancer-free.

 

[ahimsa]

I have POTS and NMH. I went through menopause a couple years ago and had no serious problems at all. A bit of flushing (hot flashes) but that's it. I've never taken any hormones.

One good side effect has been fewer migraines because I used to get menstrual migraines around the time of my period.

I don't know whether I'm just lucky (good genes?), or whether it has to do with being a vegetarian (I think some studies say meat/dairy can cause more menopause symptoms?), or what. Who knows?

I wish I had some suggestions for you but my NMH/POTS is just about as bad as always. No better and no worse.

 

[pattismith]

Had you your blood Calcidiol and Calcitriol checked, it seems that low levels are associated with POTS:

1-α hydroxylation defect in postural orthostatic tachycardia syndrome: Remission with calcitriol supplementation
Article · August 2012 with 27 Reads1st Shilpa Chaudhari 2nd Alan Sacerdot 3rd Gul Bahtiyar
Abstract
A 37-year-old woman presented with a history of reactive hypoglycaemia, non-classic adrenal hyperplasia (NCAH), osteopenia and fibromyalgia. After several months of palpitations, postural orthostatic tachycardia syndrome (POTS) was diagnosed by tilt table studies. Her heart rate (HR) reached 191 bpm at 60 degrees from horizontal. Investigation suggested increase in epinephrine and norepinephrine levels in response to tilt table. Her 25(OH) vitamin D level measured by immunoextraction radioimmunoassay was 35 pg/ ml (normal 9-54 pg/ml) while her 1,25(OH)(2) vitamin D3 level was 24 pg/ml (normal 30-67 pg/ml). Accordingly, she was started on calcitriol 0.25 mcg orally daily. At her next visit after 5 months, she reported remarkable improvement in her palpitations and had been working full time for the past 4 months. HR both seated and upright was 72 bpm. After 3 months, her 1,25(OH)(2) vitamin D3 level on calcitriol was 40 pg/ml. The authors suggest that 1-α hydroxylation defects should be sought and treated, if present, with calcitriol in patients with POTS.


Acta Neurol Scand. 2015 Oct;132(4):242-50. doi: 10.1111/ane.12390. Epub 2015 Feb 24.
Vitamin D deficiency in Parkinson's disease patients with orthostatic hypotension.
Jang W1, Park J2, Kim JS3, Youn J4, Oh E5, Kwon KY6, Jo KD1, Lee MK1, Kim HT7.
Author information
Abstract
OBJECTIVES:
The purpose of our study was to investigate the associations between serum vitamin D3 levels and orthostatic hypotension (OH) in patients with Parkinson's disease (PD).

MATERIALS AND METHODS:
Fifty-five patients with PD were enrolled in this study. Blood pressure (BP) measurements were gathered while the patients were in the supine position and while standing up. Then, the patients were divided into two groups: PD patients with and without OH. We compared the levels of serum 25-hydroxyvitamin D3 and 1, 25-dihydroxyvitamin D3 (calcitriol) between the two groups.

RESULTS:
Serum 25-hydroxyvitamin D and calcitriol levels were significantly decreased in patients with OH compared with those without OH. The systolic and diastolic BPs and symptom severities significantly negatively correlated with the serum 25-hydroxyvitamin D and calcitriol levels.

CONCLUSIONS:
Although the underlying mechanism for this association is not fully understood, our results suggest that low vitamin D status is associated with OH in patients with PD.

 

[Invisible Woman]

Nope. Thanks for that @pattismith . This is new to me. I have had no real help with POTS. I am supplementing vitamin Deficiency though.

I'm hoping to see my GP this week so I'll mention it. I don't know if it's something the NHS will test though. It can be hard enough getting them to do regular mainstream stuff at times.

 

[Adamm]

Had you your blood Calcidiol and Calcitriol checked, it seems that low levels are associated with POTS...

one study is not usually enough to prove or disapprove something

 

[Starsister]

Had you your blood Calcidiol and Calcitriol checked, it seems that low levels are associated with POTS:

1-α hydroxylation defect in postural orthostatic tachycardia syndrome: Remission with calcitriol supplementation
Article · August 2012 with 27 Reads1st Shilpa Chaudhari 2nd Alan Sacerdot 3rd Gul Bahtiyar
Abstract
A 37-year-old woman presented with a history of reactive hypoglycaemia, non-classic adrenal hyperplasia (NCAH), osteopenia and fibromyalgia. After several months of palpitations, postural orthostatic tachycardia syndrome (POTS) was diagnosed by tilt table studies. Her heart rate (HR) reached 191 bpm at 60 degrees from horizontal. Investigation suggested increase in epinephrine and norepinephrine levels in response to tilt table. Her 25(OH) vitamin D level measured by immunoextraction radioimmunoassay was 35 pg/ ml (normal 9-54 pg/ml) while her 1,25(OH)(2) vitamin D3 level was 24 pg/ml (normal 30-67 pg/ml). Accordingly, she was started on calcitriol 0.25 mcg orally daily. At her next visit after 5 months, she reported remarkable improvement in her palpitations and had been working full time for the past 4 months. HR both seated and upright was 72 bpm. After 3 months, her 1,25(OH)(2) vitamin D3 level on calcitriol was 40 pg/ml. The authors suggest that 1-α hydroxylation defects should be sought and treated, if present, with calcitriol in patients with POTS.


Acta Neurol Scand. 2015 Oct;132(4):242-50. doi: 10.1111/ane.12390. Epub 2015 Feb 24.
Vitamin D deficiency in Parkinson's disease patients with orthostatic hypotension.
Jang W1, Park J2, Kim JS3, Youn J4, Oh E5, Kwon KY6, Jo KD1, Lee MK1, Kim HT7.
Author information
Abstract
OBJECTIVES:
The purpose of our study was to investigate the associations between serum vitamin D3 levels and orthostatic hypotension (OH) in patients with Parkinson's disease (PD).

MATERIALS AND METHODS:
Fifty-five patients with PD were enrolled in this study. Blood pressure (BP) measurements were gathered while the patients were in the supine position and while standing up. Then, the patients were divided into two groups: PD patients with and without OH. We compared the levels of serum 25-hydroxyvitamin D3 and 1, 25-dihydroxyvitamin D3 (calcitriol) between the two groups.

RESULTS:
Serum 25-hydroxyvitamin D and calcitriol levels were significantly decreased in patients with OH compared with those without OH. The systolic and diastolic BPs and symptom severities significantly negatively correlated with the serum 25-hydroxyvitamin D and calcitriol levels.

CONCLUSIONS:
Although the underlying mechanism for this association is not fully understood, our results suggest that low vitamin D status is associated with OH in patients with PD.

Hmmmmm, I have had the symptoms of POTS for years but also have high D levels just recently confirmed. I am 63... Post menepause since age 37....early menepause not uncommon I understand for CFS and Fibro.

 

[pattismith]

@MeganM, the association between low calcitriol+POTS may not be a concern for every POTS people.
Every body takes "vitamine D" around here, but doctors only supplement people with provitamine D without checking if this provitamine is correctly hydrolysed in active vitamine D in the liver and kidney!
Who knows if you don't have a calcitriol issue? You can only know if you have checked it...

@Adamm, one case report doesn't make a rule, but I can see many people around here that feel concern about taking the right form of Vitmaine B12 and Thiamine, and nobody is worrying about the vitamine D form he is taking!
We can have issues with vitamine D metabolism as well as with other vitamines!

Vitamine D activation through metabolism involves several hydrolase enzymes from the liver and the kidney and we can have problems with them as much as with our other enzyms...

http://forums.phoenixrising.me/index.php?threads/vitamine-d-status-and-metabolism.53287/#post-884481

 

[Learner1]

This explained my POTS.

http://www.sciencedirect.com/science/article/pii/S0889159115300209

The CellTrend test can test for them.

 

[bombsh3ll]

I think the first study is more useful as the patient responded to treatment. The second just demonstrates association, and one obvious explanation is the more disabled somebody is by orthostatic intolerance, the less time they probably spend outside in the sunshine, which is where most of our vitamin D comes from.

I have come across this study before, shortly after I had bought a year's supply of standard vitamin D supplements, but when I come to the end of them I think I will try calcitriol, just to cover all bases.

The CellTrend test can test for them.

I am really interested in testing for autoantibodies in relation to my POTS but this is not provided in the UK - can patients request tests themselves from CellTrend and did you have to specify which particular test you wanted or is there a standard dysautonomia battery?

 

[Learner1]

I think the first study is more useful as the patient responded to treatment. The second just demonstrates association, and one obvious explanation is the more disabled somebody is by orthostatic intolerance, the less time they probably spend outside in the sunshine, which is where most of our vitamin D comes from.

I have come across this study before, shortly after I had bought a year's supply of standard vitamin D supplements, but when I come to the end of them I think I will try calcitriol, just to cover all bases.

What's your rationale for calcitriol?

I am really interested in testing for autoantibodies in relation to my POTS but this is not provided in the UK - can patients request tests themselves from CellTrend and did you have to specify which particular test you wanted or is there a standard dysautonomia battery?

I had blood for my CellTrend test done in a doctors office in California. They FedEx'd the tubes to Germany. I would suppose any doctor in the UK could do the same. Then, to get my results, I had to pay them €450 by PayPal, and they immediately emailed the results.

The Mayo Clinic has a second panel with more antibodies, called Pavel. I haven't done it. The doctor said it would be $1,000.

 

[bombsh3ll]

What's your rationale for calcitriol?

It's the active form of vitamin D that the body uses. Some people like the patient in the study cannot convert the supplements (usually cholecalciferol) into this.

I live in Scotland where we get little sunshine and am largely housebound so I take a vitamin D supplement but my current one is cholecalciferol. As I am supplementing anyway, I think I'll buy calcitriol next time to see if it makes a difference.

I just had a look at Celltrend's website, it looks really good - only problem for me is getting the blood centrifuged. I would need to find a private lab to do this which would be costly, probably require a consultation etc. If they accepted standard uncentrifuged tubes it wouldn't be a problem - I could just have a colleague take blood from me as I have for other private tests.

I have sent Celltrend a message asking if they have a list of UK labs that they deal with.