Dysautonomia and hypothyroidism: So a few years... - Thyroid UK

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Dysautonomia and hypothyroidism

Michaela_l
Michaela_l

So a few years ago (like 6,7) I had a tilt table test; I was collapsing etc and then it went away. Until about 2 years ago, once again I'm collapsing (or near abouts, since I can stop it), my blood pressure and heart rate mess around and I've found out I'm hypothyroid.

I have episodes of tachycardia, which a Dr has told me is due to my BP dropping..which I understand (similar to POSTS but BP)..as I am a health care practitioner myself.. I forgot to mention to him that my BP sometimes goes up when I stand..but long story short, I'm changing my BP medication, he said I may need to increase levothyroxin, I'm due to have a tilt table test again and have a spider flash ECG monitor for 3 weeks.

I'm just wondering if theres any research into dysautonomia and the link with hypothyroidism...? I've seen some..but it doesn't really answer anything.

Any help will be appreciated.

29 Replies
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SlowDragon
SlowDragonAdministrator

Are you still only on 25mcg dose of Levothyroxine? That is only half the standard starter dose recommended by NHS guidelines

Bloods should be retested after 6-8 weeks

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

Symptoms can be many and varied

thyroiduk.org.uk/tuk/about_...

Hey so I'm not up to 37.5mcg of levothyroxin.. cardiology said it probably needs to go up. Vitamin D is lovely now, over 100 can't quite remember what. Everything is a bit low regarding ferritin etc etc..but working on that. Need to get that tsh down! It was still at 8 on 25mcg levo. I've found more studies now looking into dysautonomia and the possible link with thyroid dysfunction. It's a difficult one to control..I'm hypertensive normally, then when it dropping etc..what do ya do.

Feeling better than I did though, doctors are finally listening. Cardiology said why did you come off levothyroxin with a high tsh.. because endocrinology told me to! Useless.

SlowDragon
SlowDragonAdministrator
in reply to Michaela_l

Most patients eventually need somewhere between 100mcg and 200mcg so not surprised you feel terrible

Increases in maximum of 25mcg steps. Retesting 6-8 weeks after each increase

Always make sure you get same brand of Levothyroxine every prescription

Oo I'm not sure it is. The reason they're going up slowly is because my ft4 was on the higher side..but like a GP said..I might have been running high (he has hypothyroidism so completely understands me), I've said that for ages! I've probably had hypothyroidism for years.. I started to collapse at university, be in while I was scrubbed at the table, but it happened a fair amount of times. Tsh was high, then went back down..but I guess it was just under the range..I wish I looked into it more, but I didn't know anything back then. I have t wave inversions and other ECG abnormalities too, which I've read in a book (Principles and practices of thyroid gland disorders), can be caused by thyroid dysfunction.

SlowDragon
SlowDragonAdministrator
in reply to Michaela_l

Symptoms can be varied and vast. Irregular heartbeat or palpitations or missed heart beats are common

Have you had ultrasound scan of thyroid?

Or had both TPO and TG antibodies tested?

Low BP or high BP

Tpo yes...the rest no. My issue is that I feel faint a lot, tachycardia, missed beats.. cardiology are going down the BP dropping route. Though he did say I'll need to increase levo, as previously mentioned. He was as confused as I was, when it came to the consultant telling me there's nothing wrong..

I'm just glad to be getting somewhere..I had that consultant telling me there's nothing wrong and to try antidepressants, I've had a and e saying I have anxiety...then having to go and tell my boss that..I felt like an idiot..when all along I knew I wasn't ok! I've had family say, "well what if he's right" meaning..nothing wrong..it's been ridiculous..is it always this hard for hypothyroid patients?

SlowDragon
SlowDragonAdministrator
in reply to Michaela_l

Yes....I doubt many of us would have made progress without this forum. I certainly wouldn't.

Full private testing is for many the first step

Always get testing as early as possible in morning and fasting and no Levo in 24 hours prior to test

On Levothyroxine the most important thing is for FT4 and FT3 to be measured and at adequate levels

10-20% of Hashimoto's patients never have raised antibodies

Endocrinology never seem bothered about ft3, but cardiology actually said I've got lots of room for it to increase...he's actually bothered! I had raised tpo. I know this forum has helped a lot, both in helping me find out what's wrong, and for my mental health. Constantly battling with doctors gets to you in the end doesn't it...I do it for patients..but not myself..well...I am now.

SlowDragon
SlowDragonAdministrator
in reply to Michaela_l

If you have high TPO antibodies then you have Hashimoto's also called autoimmune thyroid disease

Medics ignore the autoimmune aspect, but patients need to consider it

Gluten intolerance is extremely common

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

TSH on Levothyroxine should be under 2 and FT4 towards top of range and FT3 at least half way in range. But many of us need FT3 at least in top third. Many with Hashimoto's are poor converters of FT4 to FT3

Getting vitamins optimal and strictly gluten free both help. Levothyroxine dose is increased slowly to bring TSH down

If FT3 remains low then many eventually need addition of small dose of T3

Hi, ye my ft3 is kinda low for how high my ft4 is.. I'm struggling to go gluten free. My guts aren't in a good way, so I know I need to do it. I'm not coeliac, tested negative.

Tsh was like 22,26 came down to 8 while on levo..when the consultant said nothing wrong..I said what about my raised tsh..he said my antibodies are irritating it causing it to be high...right..ok then...and left it at that. I am fully aware I have autoimmune hypothyroidism..now I'm sorting myself out and having to argue the case with nearly every GP..except the one I saw last time, who upped my levo...as I said before, he's hypothyroid so he knows what's going on. It's been a needlessly long, difficult journey. I'm still off work and due to be married..so let's hope I feel better soon. I think my body has been struggling for years.

I have Hashimotos and have also recently been diagnosed with dysautonomia. I'm told it often surfaces alongside autoimmune diseases such as Hashis.

Michaela_l
Michaela_l
in reply to swebes

Hey, was you told it would improve if you're hormone levels go up? Because I'm hoping that'll happen.

swebes
swebes
in reply to Michaela_l

I was never told that specifically, but was told I needed to optimize any underlying conditions. Seeing PCP today to possibly increase thyroid meds. Hoping it actually makes a difference.

Michaela_l
Michaela_l
in reply to swebes

Hopefully!! I knew a few people who used to collapse and have tachycardia after eating. Once they sorted their dose out they improved!

swebes
swebes
in reply to Michaela_l

I'm hopeful but not holding my breath, as horrible as that sounds! Dysautonomia came out of nowhere for me (as it does for many) and it's been a battle ever since. Completely turned my life upside down.

Michaela_l
Michaela_l
in reply to swebes

Great :/ I've just posted a new question.. regarding a short synacthen test..have you had one?

swebes
swebes
in reply to Michaela_l

Not had that test done yet. My 8am serum cortisol has actually been high twice. Just finished a saliva cortisol test taken x4 for the day and am awaiting results. Curious to see what it shows.

Michaela_l
Michaela_l
in reply to swebes

Hey I read that when youre hypothyroid, your adrenals have to help when waking up...so they release high noradrenaline...so I'm wondering if that has a link with it? I dunno...I'm gonna discuss my results with a GP on Monday..I don't trust the endocrine consultant at all..I've posted before about how he told me there's nothing wrong and to go on antidepressants! Had a lot of issues. The GP I'm seeing has hypothyroidism himself..so he gets it!

swebes
swebes
in reply to Michaela_l

Yeah, same here. I've had lots of docs try to brush me off with anxiety and depression diagnoses, despite labs/symptoms clearing indicating something is off. So frustrating!

I've read that too about the adrenals stepping up when thyroid is down. My EP has also said that I have low blood volume and that the catecholamines kick in to help maintain BP, so I'm ending up with these surges at night, especially during those early morning hours when cortisol and adrenaline naturally rise. He suspects it's just enough to send me over the edge.

Michaela_l
Michaela_l
in reply to swebes

We will get to the bottom of it in the end! I hope. At the minute I'm contemplating cancelling our honeymoon.. I'm feeling rubbish anyway, it's not like I'm gonna fully enjoy it! I'm in no state to be walking around Pompeii :(

swebes
swebes
in reply to Michaela_l

Oh, I hate that for you! Planning stuff and actually being able to keep the plans is always a gamble with this. You don't know from one day to the next how you'll feel. If you can cancel and not forfeit a ton of money, maybe that would be good for now - then reschedule when your symptoms are more under control.

Michaela_l
Michaela_l
in reply to swebes

Ye, I mean we took out a thing so we can reschedule, but..when am I gonna be better, I get time off work, my fiance is leaving the forces and getting a new job..so it's kinda...just..up in the air. So might just have to cancel, I guess that's what you get insurance for. Some days I'm like yes I'm going!! But...for the most part, I'm like

.hmmm...nope.

Am I going to get time off work*

swebes
swebes
in reply to Michaela_l

I hear ya. I keep signing my daughter up for activities and then having to cancel them at the last minute because I'm not well enough to drive. So glad you bought the insurance so you can cancel! I always cheap out and pass on that option :)

Michaela_l
Michaela_l
in reply to swebes

Rubbish isn't it :/ ye, I'm sad but there's no point going if I'm just gonna sit there and do nothing...

When I was in my 20’s after birth of my daughter I was diagnosed with MVP and dysautonomia. I had lots of palpitations and low blood pressure and short of breath. I just dealt with it best I could I found I had hypothyroidism too. When my thyroid was treated properly my MVP got better. Definitely make sure your thyroid optimal and thiamine and b12 good luck

Michaela_l
Michaela_l
in reply to Gigi216

Thank you ever so much. I'm fed up..."oh we're not gonna change anything, redo bloods in 6 weeks". I can't wait! I need to work!

Hey I would be interested in hearing if you found a good endometriosis that understands both hypothyroidism and POTS? I have a confirmed diagnosis of the latter and have found that the autoimmune version of POTS results in auto antibodies in muscarinic and adrenergic receptors but the most recent literature review of this by one of the world's cardio experts also finds anti thyroid globulins too in patients. Think it's to do with blood plasma volume being different in POTS which causes the BP issues but think in morning people thyroid meds reduce BP so am not sure but there has to be a link as several pots patients also have adrenal insufficiency. I don't know am not a medic but my Genova diagnostic tests shows high TSH at 4.5 normal TPOs and am very keen to find someone in UK that can advise me as my cortisol synachten was normal. But I feel I need levo or something similar. Please PM if you can advise thanks

Hi, was your cortisol level normal though? It seems that drs seem to shrug off abnormal results.... because "it's an unreliable test", in which case, why bother doing it?

As I keep telling my family, who unfortunately seem to be going through similar problems, get your results printed! 'Ok' has a big range, and in fact, the lab who my GP uses says a TSH of 4.5 is ok, yet many studies I've looked at, say anything over 3, you would class as hypothyroid.

My endocrine consultant is useless, he told me that I was depressed, yet when I sorted myself out, went on levothyroxin etc, he told me to keep going what I was doing...yes I will, no thanks to you. There's no communication; the Dr who told me I had POTS was quick to diagnose, but didn't look at the situation holistically; I wasn't just going tachy when standing, I was tachy whenever my heart felt like it. I believe in my situation, that I have been hypothyroid for years (I can only go as far back as 2015, and I had a raised TSH then..yet no one acted on it, no one checked my pituitary, nothing). As a result my adrenals took the stress..again drs don't want to admit my results weren't ok. I started on levothyroxin against the wishes of my consultant, and started eating as soon as I woke up, to help my adrenals. I also started taking my levo at night, which made a big difference! I stopped getting hot flushes and going off. I'm not brilliant, but I deal with it.

I'm at cardiology tomorrow to discuss my 3 week ECG holter monitor, and tilt test. After reading the letter I received, I had a slight drop in BP, to which I felt ill..but it wasn't massive. I believe now that I have helped my adrenals by cutting down on sugar, eating asap in the morning, and actually receiving the treatment I have needed for years, that if we were to repeat the tilt test, there would again be a slight drop, but less so and I wouldn't feel it's effects as much.

I have a fair amount of TPO antibodies, but can't comment on the antibodies you are referring to..my only advice would be to follow a plan to reduce immune system flare up. I am trying, but failing, to cut down on soy and gluten. Avoid metals which I'm allergic too, got myself a water filtration system from 'Epic water' who claim to extract nearly all flouride from the water. I unfortunately kinda live near some factories, so I'm doing research at the mo, looking into what house plants to buy and how many..just to help clean the air. I work in the operating theatre which will not help at all; there seems to be an awful lot of people working in that environment which have developed an autoimmune disorder, be it lupus, MS, graves, Hashimotos..the list goes on.

Good luck.

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