PCOS/body jerking

[Kellygreen]

Does anyone experience body jerking from the anxiety symptom from PCOS? This is not a tremor. The doctor said the PCOS is what is causing my daughters body jerking, it happens mostly at rest. I just want to make sure it is not neurological.

[Marz]

I don't think so - but then I am not a Doctor ! When you posted 7 months ago it was suggested to have vitamins and minerals tested - B12 - Folate - Ferritin - VitD. Am wondering if you managed to have those done. Low B12 can present with many neurological symptoms as you can read in the link below ....

b12deficiency.info/signs-an...

[Kellygreen in reply to Marz]

She takes a prenatal vitamin suggested by the doctor and She was vitamin D deficient a while back, but no change. I will have them check her B next time. I think I do remember reading about that. I also read that low magnesium and potassium can do this. Thank you for your reply.

[Marz in reply to Kellygreen]

Which pre-natal vitamin ? If there is even a little B12 in it - the results will be skewed and not show a true reading. If her B12 is low then the Pre-Natal supplement will not provide enough B12.

Is she supplementing VitD ? If she is pregnant then it is very important .... So when supplementing VitD it is important to also take the co-factors - Magnesium and VitK2-MK7

What was her treatment when Deficient in VitD ? Do you always obtain copies of your test results with ranges - they are legally yours !

[Kellygreen in reply to Marz]

I don’t know how well your doctors are there, but finding a good doctor here is impossible. Her treatment for D deficiency was taking a pretty high supplement daily. Not sure of the dose. She is not trying to have children as of yet. Her endocrinologist said the body jerking was from her anxiety. She recently told her new general practitioner that the endocrinologist said that is what the shaking is from and he said “no it isn’t”. But did not say what is was or attempt to find out. Lol. My husband has this thing at work called “Best Doctors”. We are trying it out. They take all her information and a panel of doctors diagnose her.

[Jazzw]

I don’t think the doctor’s right either - that sounds like a “get you out of the room” sentence. That said, it probably isn’t anything seriously wrong.

When does it happen most? My other half use to have what are known as clonic shocks just as she was drifting off to sleep - no other time, just when really tired.

Sleep myoclonus is described in the article below (towards the bottom)

ninds.nih.gov/Disorders/Pat...

[Kellygreen in reply to Jazzw]

Thanks for your reply. I know about the jumping in your sleep thing. Sometimes happens to me. This is when she is wide awake. Mostly sittting in a chair. Her body jerks. We first thought is was from her hypothyroid symptoms but then she had her thyroid removed and it is still happening. I took her to a neurologist and they were suppose to get back with us . It’s been two years now. You have to diagnose yourself anymore.

[shaws Administrator in reply to Kellygreen]

As your daughter is already on thyroid hormones as her thyroid gland has been removed. If you can get a Full Thyroid Function Test TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

The blood test has to be at the very earliest and allow a gap of 24 hours between the last dose of hormones and the test. Also don't eat but she can drink water before it as TSH is reduced.

[shaws Administrator]

Has your daughter had a Full Thyroid Function Test - although this may not show that the person is hypo.

This is an excerpt from a website which is now closed due to the demise of the Doctor. I think it is very important, especially for your daughter:-

"Multiple Ovarian Cysts as

a Major Symptom of Hypothyroidism

The case I describe below is of importance to women with polycystic ovaries. If they have evidence, such as a high TSH, that conventional clinicians accept as evidence of hypothyroidism, they may fair well. But the TSH is not a valid gauge of a woman's tissue thyroid status. Because of this, she may fair best by adopting self-directed care. At any rate, for women with ovarian cysts, this case is one of extreme importance.

In 2008, doctors at the gynecology department in Gunma, Japan reported the case of a 21-year-old women with primary hypothyroidism. Her doctor referred her to the gynecology department because she had abdominal pain and her abdomen was distended up to the level of her navel.

At the gynecology clinic she underwent an abdominal ultrasound and CT scan. Thes imaging procedures showed multiple cysts on both her right and her left ovary.

The woman's cholesterol level and liver function were increased. She also had a high level of the muscle enzyme (creatine phosphokinase) that's often high in hypothyroidism.

Blood testing also showed that the woman had primary hypothyroidism from autoimmune thyroiditis.

It is noteworthy that the young woman's ovarian cysts completely disappeared soon after she began thyroid hormone therapy. Other researchers have reported girls with primary hypothyroidism whose main health problems were ovarian cysts or precocious puberty. But this appears to be the first case in which a young adult female had ovarian cysts that resulted from autoimmune-induced hypothyroidism.

The researchers cautioned clinicians: "To avoid inadvertent surgery to remove an ovarian tumor, it is essential that a patient with multiple ovarian cysts and hypothyroidism be properly managed, as the simple replacement of a thyroid hormone could resolve the ovarian cysts."[1]

Reference:

1. Kubota, K., Itho, M., Kishi, H., et al.: Primary hypothyroidism presenting as

multiple ovarian cysts in an adult woman: a case report. Gynecol. Endocrinol.,"

Although this is an extract, the doctor above would never prescribe levo - only NDT (natural dessicated thyroid hormones) or T3 alone.

[Kellygreen in reply to shaws]

Ok. I left some information out. She was diagnosed with Hashimoto’s at 16 years old. The doctor said it should eventually die out and she will start to feel better as her hyperthyroid symptoms will go away and then she would be hypothyroid. She was put on methamozole and something for her fast heart rate. For 3 years, The doctor then suggested that she have her thyroid removed because she still had hyperthyroid symptoms. She had it take it out at 19 years old and has been on levothyroxin for a underactive thyroid. She was just recently diagnosed with PCOS because of her inability to lose weight. When they did test her testosterone was elevated and they told us she cannot lose weight easily because she is insulin resistant. They never did any more testing for example a ultrasound of her ovaries. They said she necessarily doesn’t need to have cyst on her ovaries to have this syndrome. I just feel that her shaking has nothing to do with us and might be neurological and needs to get further tested

[shaws Administrator in reply to Kellygreen]

Mother knows best and I can confirm this due to the doctor insisting that my daughter (at 11 years old) could not have RA but did not do a blood test despite my sister having it but he ticked me off in no uncertain terms for 'putting ideas into her head' - the result is a very, very severely disabled person who has had umpteen ops that I've lost count.

Try your best to see if she gets all tests necessary.

Does your daughter's replacement hormones consist of some T3. I'd get a Full Thyroid Function Test, especially FT4 and FT3. T3 is the only active thyroid hormone and the brain and heart need the most. T4 (levo) is inactive and has to convert to T3.

I have my thyroid gland and only recovered on T3 alone. Some bodies also don't convert Levo into sufficient T3. On the following link you will see why FT4 and FT3 are necessary but rarely tested as doctors usually only take notice of the TSH.

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/testin...

[Kellygreen in reply to shaws]

I will do that. That is true. They have never check the T3 and 4. I really don’t understand the whole thing, believe me when I say I try. Thank you

[shaws Administrator in reply to Kellygreen]

It is ridiculous that we have to look on the internet with regard to health issues, especially in the UK and with the NHS. Thankfully we have the opportunity to find some good forums which are helpful and personal experience is worth its weight in gold. There are two forms -T4 and T3 and Free T4 and Free T3. So you have to make sure it is the frees.

I had never known anyone who was hypo or had problems with thyroid gland. By the time I was diagnosed I doubt even the health professionals know of any either but I got other diagnoses and even an op which was completely unnecessary as the 'problem' which was going to be removed wasn't even there.

[Saya85]

Hi kelly

In the above comment you said she was diagnosed with Hashimoto a (primarily hypothyroid not hyperthyroid condition) but they treated her for hyper symptoms?

1) Could it have been that she was actualylhypo not hyper in which case the methamazole would have suppressed her thyroid even further to the point of removal? Sorry it just didn’t seem to make sense to me. Palpitations and other things can be hypo as well as hyper symptoms if very severely hypo. They can also be vitamin deficiency symptoms among others.

2) she should have an ultrasound if she has symptoms of gynaecological issues. You can have polycystic ovaries without the syndrome (hormone problems) but quite unusual for them to say you can have the syndrome without the cysts!

PcOS is closely linked with thyroid issues and the correction of one can help the other. I would definitely not trust the doctor who said her jerking was a PcOS symptom.

3) However back to your original question regarding jerking. Do you mean spontaneous jerks like restless leg syndrome? Where she may kick out her arm or leg involuntarily?

I would definitely have her b12 tested as I can attest to how much difference it made to me and that was one of my symptoms (a lot of neurological conditions like MS etc are misdiagnosed and it’s simply a b12 deificinecy)

If she has b12 in her vitamins she may not be absorbing it properly- a lot of hypothyroid patients have stomach acid issues and gut problems that make them b12 deficient. If this has been persistent over some time she may actually have pernicious anaemia causing b12 deficiency. Worth checking up on this - she would need b12 injections to really correct this.

4) The other one is magnesium- again I had masses of success with it and was great for my cramps and jerks etc

If she’s low vit D as others have said then she needs magnesium too. I would get the ‘better you’ spray of magnesium and ask her to spray it on skin or take magnesium baths and see if that helps with the jerking. The number of people I have seen who have improved just with this is truly astounding!

Good luck with everything x

[Kellygreen in reply to Saya85]

Thank you for your reply. Yes she had hyperthyroid symptoms with her Hashimoto’s. Her TSH was extremely low which means the opposite and made her hyper. Her symptoms were identical to someone with Graves’ disease. She was hot all the time, her heart rate was very fast, tired, she had a goiter, she used the bathroom more often, produced excessive saliva in her mouth. My other two children, her younger brother and sister were also diagnosed with Hashimoto. They always had the hypo symptoms. The doctor feels that there may have been a time that they were hyper and it switched to hypo. I do recall when my son was around 6 years old he was running around the house holding his heart yelling hysterically that there was something wrong. He wore a heart monitor for a few hours and nothing was detected. I was told With Hashimoto you can get hyper and hypo symptoms. We are from the USA and can’t get a good doctor. It is rediculous!.

[Saya85 in reply to Kellygreen]

Oh gosh crazy- I do know with hashimotos you can get a ‘dumping’ of hormones that can effectively make you hyper for a while- I’ve never heard of it prolonged for that long. Sounds like it was graves that changed- or diff levels of thyroid antibodies

I’ve always suspected I was hyper as a child as I lost masses of weight over weeks and incredibly fast metabolism and adrenaline levels. I think when I hit puberty it crashed other way.

It’s scary how little is known about it by doctors. Have you tried finding a functional doctor in USA?

Dr izabella wentz (thyroid pharmacist- online website) is a great resource for American patients

Good luck- I hope you find some answers. But definitely pursue the vitamins- easiest thing to fix and sooooo underestimates it’s ridiculous

[humanbean]

I think the problem is almost certainly low vitamins and minerals. It is just trial and error which ones help. The ones that help me are :

Iron - MUST be tested first. This is a good test for checking iron thoroughly :

medichecks.com/iron-tests/i...

Magnesium - no point in testing this first, just find a supplement that works. To find the choices available do a web search for "best and worst forms of magnesium". Your daughter will need about 300mg - 400mg magnesium per day. It can make some people a bit sleepy so take it just before bed.

Potassium - MUST be tested first, and be supplemented cautiously if levels are low.

[Hidden]

I had body jerks just as you describe just over a year ago at the point when I was trying to get a diagnosis for hypothyroid and was at my worst.

They happened when I was particularly tired and drained and when I sat or lay down to rest, never when I was 'tense' through standing. My vitamin levels were also low - possibly relevant are low B12 and iron??

Now that all of my levels are good, nutrient and thyroid, I don't get them.

On the path to being better they subsided massively and were a clue to something being low if they returned.

The jerks were completely involuntary and sort of took my breath. Initially they were quite frightening, lasting for split seconds. Sometimes I got an electric shock type sensation in different muscles just before the jolt.

I don't know exactly what caused them but getting my levels up has stopped them. I didn't ask my GP at the time as I was being offered antidepressants, which said it all really. Hope this is helpful for you. X

[Kellygreen]

Ok, just got her lab work back and her testosterone went down, maybe a 26. Why is she still having difficulty losing weight?