I had my appointment todayUpset is an understatement..Had a list from the advice of you lovely guys.
1.24hr urine cortisol tests and short syactyn tests normal-stated had a great response Addisons ruled out.Asked why 2 high cortisol 9am bloodtests stated normal response to stress.Im always stressed will I get adrenal fatigue if this continues.Answer no that's not how it works
2.TSH 4.1 at the highest and T4 went over once at 22.7.Answer nothing wrong with my thyroid or parathyroid.
Refused to check my throglobulin said no need US normal of throat-thyroid ruled out
Was dismissive of pituitary issues.2 head cts and venogram normal.CT scan of abdo with contrast and mri stated adrenals unremarkable.
Hairlloss is down to sudden weightloss and will stabile when weight does.weight has stabilised just have to wait and see cause it's getting worse.
7 day cardio monitor normal lowest hr 49 highest 147 average 80.
24 hour BP monitor low BP in mornings 82/64. Average BP 104/66
.Advice come off propranolol and go on other meds recommended by cardiologist.Fir low BP they want me to go on fludrocortisone.He said its safe as my adrenals are good.Looked up side effects -scary drug can't I just live with the low BP at times?
Asked regarding HRT he said make my own decision.
Useless! He was dissmissive and I got flustered.Scared to death of adrenal failure .He did order 2 blood tests for 2 rare disorders which I will get the blood results back in a month.
I'm absolutely devastated no answers.
Should I just accept this or any suggestions.Worried and a little scared need a hug 😌
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No not on magnesium.Endo says the dose of propranolol I'm on is miniscule 10mg twice a day.He said he has loads of patients on it and no affect on thyroid.seeing cardio for chat next Tuesday to see about coming off it and seeing if there's an alternative.Need a drug that lowers my heart rate but doesn't lower my BP
I've come off my PPzis 4 days ago.Have to have camera test and possible ct scan to try and determine why I'm low in ferretin,not absorbing nutrients and losing 9 stone.They will determine if I need to take them after the scope.im literally worn out with it all.cancer pathway yet again
Thank you very usefulIt's a viscious circle.Angry how gp left me on them for 14 years.Acid quite bad at times.Worried that's its ulcers or cancer.If you don't control the acid it can cause all sorts.Take meds you can absorb.Gastro no use tells me to take a multi vitamin How won't absorb it?
Wonder how you can survive not absorbing nutrients from food.it has me really worried and scared
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
If you want to try a different brand in the meantime, one with virtually identical doses of the ingredients, and bioavailable too, then take a look at Vitablossom Liposomal B Complex. Amazon sometimes has it branded Vitablossom but it's also available there branded as Yipmai, it's the same supplement
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
Can't take anything with biotin in at the moment.seeing that many consultants GPS at minute having bloods taken all over the place.Will do once I'm on 3monthly review bloods.Going to get zinc,folate and vit d checked in 3 months.just taken another vit d after this result so hopefully OK on next result.zinc now taking everyday.Not eaten red meat in months just had a steak.eating all the greens.
Is white or wholemeal fortified bread better? Or no difference?
Silly question perhaps but I eat 2 weetabix in the morning if you put milk and walnuts on do they stop iron absorption?
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Allergic to seafood.All I can manage is tuna and sardines.Couldnt eat liver at all .I'm hoping not to retake ppis won't take them until after camera test.Will eat red meat twice a week.
Perhaps the deficiency is diet related too didn't realise I wasn't eating enough or iron rich foods this year as I was worried about my fatty liver.Never been deficient before.
Doctor has sent 200mg 3 x times daily ferrous sulfate for 3 months should I not take but eat more iron rich foods .Is my iron panel OK?
It's so confusing and your helpful links have made me have a better understanding thank you.
Will have to wait and see after propranolol withdrawn and get thyroid tested again and see where I'm at.No point me keep panicking and pushing as they won't do anything.im proactive they're reactive I have to accept that
Could I ask a quick question on ferritin If my iron saturation was 41% 4 weeks ago.My ferretin was 42.
Does excess iron saturation go into iron storage?(Ferritin)
If that's the case why didn't my ferritin increase?
Or does iron you consume /supplement go straight into ferritin and moved into serum iron etc when required.my GO thought I had iron overload he even ordered the test.Lab rejected and said was iron results didn't indicate that as ferritin was low?
Fatty liver is caused by (mainly) carbohydrates intake. I do not believe your current inclusion of bread and cereals are doing you any favours. Wheat is well known to cause malabsorption issues in the gut. This is the reason many thyroid patients are gluten free, and you certainly sound like you need to add daily protein to your diet. Good luck
Although , Non Alcohol Related Fatty Liver disease is improved with a Low Carbohydrate diet, and High Cholesterol and acute fatty liver issues can be changed by improving the type of carbohydrate intake , Fatty liver isn't mainly caused by carbohydrate intake , there are many different medical and lifestyle causes , and actually a Keto or High Fat / Very Low Carb diet can make NAFLD conditions worse.Many people with fatty liver issues need to increase their complex carb intake if they have been on very low carbs for years and be careful about the type and level of protein consumption instead , if there has been some damage depending on the cause.
People do need to be careful and avoid Keto or severely low carb / high fat diets if there is a history of liver diseases or NAFLD in the family.
A certain level of complex carbohydrate intake and good fats is very important for reducing the toxic effects of certain blood markers and improving metabolism of proteins and removal of liver fats in Fatty Liver Diseases , just as it is important and extreme low carb /keto diets are also inappropriate for certain kidney conditions and Type 1 Diabetes.
Wheat is harder to digest and more ancient forms and slow/ sourdough fermented products are often better , just as for some, lactose is the issue rather than the diary product itself so lactofree can help rather than dairy free.
Going gluten free or lactofree is only necessary if a person has actually tested as gluten or lactose intolerant, as , going entirely free in these, can cause it's own issues if a product including them is inadvertently used or medically required.
The improved effect of gluten free may only be helping because a person has wheat or yeast intolerance and then they removed these incidentally when they stopped eating certain flours or too much processed food , issues with other additives and sugars or an imbalance in gut bacteria or acid production can also be incidentally improved by reducing sugar rich gluten or dairy foods .
People often have a complete overhaul of their diet improving nutrition and hydration , taking more vitamins , reducing sugar and additives , and often taking probiotics , and generally being more careful about their food intake at the same time as they begin a gluten free or lactofree free trial which makes it more difficult to be sure that the gluten change was the important difference . It can be , but often appears to be the most help because that's the most impactful change in terms of what you are used to or liked to eat.
Often other functional malabsorption tests , vitamin deficiency tests , probiotic bacteria levels etc. are not done in standard medical tests , and these can be the main issue for digestive problems, malabsorption and Fatigue.
It's all very complex and it would help if doctors would take a more individualist, holistic view to testing , as often what works for one person can make things far worse for another with a certain genetic or family profile.
Wow it really is complicated.I only eat wholemeal everything.
Have chick peas,quinoa,Bulgar wheat,wholemeal bread and pasta.Is that OK?
I can't eat fatty food it really upsets My gut cheese especially recently I've found. Low fat everything.processed very occasionally.lots of veg,salad and banana.blueberry,raspberries and blueberries.Trying to eat the 🌈
Tried sourdough bread didn't make a difference tbh.tried lactose free the same. Just don't want to make my liver worse.The rapid weight loss probably not ideal fibroscan in August good so hopefully ok
I've got a full liver /pancreas scan next Tuesday , fatty liver and pancreas diseases run in the family and they are now considering Autoimmune Hepatitis, Familial Cholesterolemia , Autoimmune pancreatitis, or primary biliary cholangitis because I already have no gallbladder .Never eaten much bad fat but have to be very careful with any level of fat now , although olive oil, Avacado , Omega 3 , garlic , sharp green apple juice daily , celery , probiotic whole milk natural yoghurt including lactofree on occasion before meals and for breakfast with good honey , probiotic supplement help the acid reflux, cool water while eating and water and green tea regularly through the day.
I can use pure Turmeric and garlic supplements , manuka honey and ginger tea to help my digestion, gut bacteria , liver and circulation but you need to check you can on your medication before you use them .
They can give a few gripe pains at first as your body adjusts or a bit of diarrhea if the dose is too high but if it doesn't cause intolerance symptoms like swelling , breathing difficulty or rashes and itching these generally go as your body adjusts over a week or two , like many side effects from prescribed drugs.
I can eat gluten , I eat less straight wheat , go for spelt or wholewheat sourdough but I vary my carbs have a lot of seeds mostly steering clear of the white carbs and only have refined sugar or whites as an occasional treat . A good range of lean meats , especially turkey , chicken and fish , eggs , I do need some lean red meat , game and offal.
Varied nuts , fruit and vegetables . If I flare I avoid fungus and yeast foods for a month as fungal overgrowth is something that has recurred to me over the years . No artificial sweeteners or flavours except the very occasional product with natural fructose based sweetener in it .
More smaller portions through the day taking the supplements with the appropriate meal and lots of water help too.
Everyone's triggers are different though so trying different foods or avoiding certain ones can help for some and not for others.
Sleeping with head and shoulders smoothly raised on pillows on your back or left side reduces acid reflux at night or oesophageal damage because of acid flowing back in a laid position.
B12 injections , gentle iron and Folates have helped Fatigue and Insomnia.
I have recently been diagnosed with Seronegative PA to go along with the Dysautonomia, Ehlers Danlos Syndrome , Pseudo Bowel Obstruction and gastric dysmotility , Fibro , CFS /CMS , IBS, recurrent acute hypothyroid symptoms (thyroid storm) from other causes like my Dysautonomia, EDS or drug reactions etc.etc and all the accompanying syndromes that go with them . as if I haven't been greedy enough already in collecting the rare health issues!
Have they checked your gall production and release of bile , build up of bile and bile salts can increase malabsorption, weight loss , pain and liver symptoms, but you still haven't got a firm cause for your changing ANA , stomach biopsies may well hopefully help with ruling out or in the causes of that as well.
Thank you your post is food for thought.Was given bile tablets 2 weeks ago last 3 days on them projectile vomited Am seeing them next week will ask about a scan of liver too.What scan are you having ?
Sounds like you have alot going on.sorry your going through this.They do say once you have 1 autoimmune others pop up.
My mum had RA and brother has type 1 diabetes.i definitely haven't got those 2.Did think lupus but rheumatology said no.
Other than weakly positive ANA .Could be sjorgens as dry eyes but 2 ENT guys said no and rheumatology.Has schwimmers test and extremely dry eyes.been sent back to rheumatology .ENA.anca,Rheumatoid factor,igg,iga,liver,kidney microsomal,anti ccp,sma,mitrocondrial,GPA,reticulin,tpo,m2,ribosomal antibody all negative(no idea what they're all for plus autoimmune liver negative.
Rheumatology said I could be a carrier of ANA or develop 1 in the future.ive symptoms though.The mind boggles
'Could I ask a quick question on ferritin If my iron saturation was 41% 4 weeks ago.My ferretin was 42. Does excess iron saturation go into iron storage?(Ferritin) If that's the case why didn't my ferritin increase? Or does iron you consume /supplement go straight into ferritin and moved into serum iron etc when required.my GO thought I had iron overload he even ordered the test.Lab rejected and said was iron results didn't indicate that as ferritin was low?'
Iron saturation is a calculation of serum iron and the transferrin (protein carriers). Because free iron is toxic the body has many complex mechanisms to try keeping enough available iron for use, enough in storage should consumption fall, all balanced by the amount of transferrin to keep it bound. Everyone's mechanisms work slightly differently as are further influenced particularly by type of consumed iron (heme/non heme), bodily inflammation caused by other health conditions or obesity, etc, etc .. ).
Ferritin 30 range 13-150
Serum iron 19 range 5.8-34.5
Transferrin 2.65 range 2-3.6
Unsat Iron binding capacity 67 range 50-90
% trans saturation 28% range 16-40%
Your results are in no way indicative of haemochromatosis. Ferritin is very low and the rest are normal corresponding in line with your serum iron which at 46% through range could do with being higher. You have other nutrient deficiencies so likely suffering some malabsorption issues. Reread the excellent advice from SlowDragon regarding high and low stomach acid. It is an eye opener and supplementing correctly could help your issues.
'Silly question perhaps but I eat 2 weetabix in the morning if you put milk and walnuts on do they stop iron absorption?' No question is silly and yes, you are correct in that milk impairs absoption of iron.
It is immensely scary when our body starts behaving in ways that conventional medicine doesn’t understand and the forum understands the feelings of isolation and fear, and is incredibly supportive. SlowDragon has given you good, solid, comprehensive, credible advice and multiple evidencing links.
What members have found is they have to take responsibility for recovering their own health as conventional medicine is pretty useless regarding thyroid issues, ie the importance of good iron/nutrient levels, the diagnosis and the dosing of meds, the negative effects of other health conditions, etc. Therefore, slow down and digest what members have kindly supplied.
TSH 3 .54 range 0 27- 4 2
Free T3 5.74 range 3.1-6.8
Free Thyroxine 17.3 range 12-22
Even though you aren't medicating thyroxine your thyroid panel presents as a little ambiguous given your symptoms and a functional practitioner might be wondering why your TSH is higher end of range and more importantly why your FT3 is higher in range than FT4 as this happens when the body is struggling and can indicate early onset hypothyroidism.
Re adrenal issues, I am not sure why you are worried about adrenal failure as you have elevated levels of cortisol and not insufficiency. Worrying about these things you don’t understand is making everything worse including your elevated cortisol which is very common on the forum. It can make you feel jittery, lose sleep and encourage blood glucose and immune issues so it is important to address with yoga, daily walks, doing something you love. There are also calming supplements and stronger adaptogens supplements to encourage lower cortisol levels.
Many of us have experienced numerous complex issues and I found listing my labs, symptoms, and any given advice/links immensely helpful in allowing feelings of control. It also helped me to present a picture that was easier for others to interpret.
Thank you so much for replying.You are right.I am stressed to the eyeballs and have been since February with not getting anywhere finding out whats wrong and copious amounts of tests.My GP thought I had cushings due to high cortisol which did worry me.i am worried that continual high cortisol will lead to adrenal fatigue or am I over thinking it !!!
Been to see 2 endos now who said my throid is fine.Is it worth seeing an Endo from the approved list?if so could you send me one,or should I just get my gp to monitor my thyroid?
With my ferritin being low my gp sent iron tablets to the chemist a 3 month supply.I take it with you saying my ferritin I should take them.i don't want my iron levels to go too high.My fbc is dropping in levels but within normal range.Still no idea what's caused the low iron not happened before.
If I'm off my PPI do I stand a chance of absorbing the tablets Do I carry on with my normal diet and consume foods with iron?
Just had a call an upper endoscopy has been ordered they want biopsies this time.Havent had my ppi in 6 days after 14 years of taking it.got a bit of acid especially at night.just have 1 lot of gaviscon has been enough.
Haurloss endo says is down to losing 6 stone in 5 months I suppose that could be the case
Everyone on this forum is so supportive.Cant thank you all enough for the advice
'i am worried that continual high cortisol will lead to adrenal fatigue or am I over thinking it !!!'
Yes, as it takes years and years and then it's not usually the low cortisol directly thats the issue but the effects on other hormones the low cortisol instigates. Your adrenals are working overtime at the moment and you need to relax them.
Your GP sounds pretty rubbish putting ideas of cushings and haemochromatosis into your head. No wonder you are anxious, and anxiety and high cortisol will feed each other.
If you supplement the iron tablets then ensure GP monitors levels frequently. I myself wouldn’t supplement iron tablets without first making efforts to improve gut absorption but introduce an iron rich diet and perhaps drink orange juice (or alcohol 😁) with your meals as both increase iron absorption.
You shouldn’t go cold turkey on PPI’s but decrease slowly over several weeks to prevent an acid secretion rebound effect. After a couple of months when levels have re-stabilised experiment with the burp test or by taking a Betaine HCL tablet as either will allow you good assessment of gastric acid levels.
I've had stomach issues since 2008.Acid reflux.Had endoscopic since I have a hiatus hernia/GORD diagnosed other than that nothing ever explained just left on PPI.symptoms now worse and after oedema was discovered by ENT in my throat I'm petrified it's Barrett osoesophegus due to throat pain.upper endoscopy normal in March this year.but who knows!!!Had to stop PPI for 2 weeks prior to the test so they can get a clearer picture of what's going on They want to do biopsies as they didn't do them in March. Think they are biopsying my stomach throat and start of small bowel for pernicious anaemia as I tested negative for IF.
I did severely restrict my diet April to September.but since then ate iron rich foods but ferritin hasn't increased. Folate has always been low had to supplement many times.b12 deficiency was caused by ppi they assumed so didn't check for other causes. My hair started to fall out July so could correspond with quick weightloss but no idea I've always been a worrier but when they found fatty liver in Feb things spiralled My stomach worsened last November and all my gp and gastro do is throw tablets at me that don't work.
As my symptoms could be any number of illnesses I've been referred everywhere and no answers.
The only tests that have been conclusive are raised calprotetctin.weakly positive ana raised cortisol and fatty liver.tachycaddia/low bp that's it.small cysts detected on kidneys,1 on my liver,ovary and 3mm cyst on my thyroid.
As my ferritin hasn't raised at all I think I will supplement and get my gp to check levels again hopefully by then biopsies would be back.no idea after endoscopy to retake ppis or not.Apot with gastro rearranged due to strike to 10th Jan.
I should be reassured after all the tests but somethings niggling at me that they're not joining up the dots and missing something.
Got no advice on whether hrt will help just got prescribed 2 months ago and sat in a drawer .Got no symptoms of it and hormones normal I get no advice or support except on here.
Gp sent the haemochromotss blood test off twice.but my iron saturation only 41% once abd ferretin has continuously dropped since January.i have dry eyes nose etc so just been read to Rheumatologist fir sjorgens.in going round in circles.Consultants on the nhs see I've been everywhere and the amount of tests and dismiss me it's not me ordering the tests or referrals it's my gp Ge just doesn't know what it is and is covering his own back
Why do 2 endos tell me not to worry about adrenal fatigue.I asked if continuously high levels of cortisol can it cause adrenal fatigue/failure they said that's not how it works and dismissed me
But your malabsorption issues aren't dire. You aren't malnourished (for example your key trace minerals selenium & copper are within range). You just have a few common deficiencies easily rectified with high dose supplementation, that then may require an ongoing maintenance dose.
You have taken a PPI for 14 years and this link evidences that long term use inhibits gastric acid required for digestion and absorption of iron and nutrients, and used to prevent gut infections. uspharmacist.com/article/lo...
If you tested negative for IF, then PPI's are said not to reduce this but there is conflicting research stating they do and another reason for common Vit B12 deficiencies. Gastric acid cleaves Vit B12 from ingested foods and is produced by the same cells that produce intrinsic factor needed for the VitB12 absorption.
If you tested negative for IF antibodies, then this is good news.
Just had a call upper endoscopy 30th December.no ppi until then.Going to ask GP to retest calptorectin whilst no ppi.No idea if I will have to start taking it again All depends what they find feel damned if I do and damned if I don't ..Seeing gastro 10th Jan.I believe you can still have PA eventhough you test negative.See what the biopsies say.hopefully my hair will grow back after iron tablets.You are right I must be able to absorb some nutrients from food.so far folate,zinc and iron are dire.
I will get my betablocker changed and see where my thyroid at.
At least my cdiff test was negative just got the hpylori and parasite test to get back.if hpylori it's antibiotics again which may me extremely ill and mess up my stomach again. Wish the hamster wheel would stop.need to have faith gastro will sort it in the end
Article is very interesting.Does state risk of fractures on ppi with hrt. Dilemma of whether to go on it now.Question if my Serum magnesium is normal.Do I still get a spray to supplement.Can you overdose on it?
If I stop taking PPI would I still need the b12 injections? Mind you b12 you can't overdose on
I find different Levothyroxine brands have a different effect on my heart rate. I had an average rate in the high 90s with resting in the mid 80s while on one brand but after changing to the brand I’m on now it dropped to mid 70s with a resting rate in the low 60s.
Could I ask , have you been given a cause for the high heart rate and low BP?Is it P.O.T.S , or some other type of tachycardia syndrome or autonomic Dysfunction?
Do you have symptoms of palpitations, breathlessness , dizziness when changing positions , from sitting to standing etc.?
Do you have poor circulation, Raynaud's , bad temperature regulation and muscle numbness on activity?
What other medications have you taken so far for the cardiac condition?
Have you had a Tilt table test ? This test is one you should discuss with the cardiologist even with normal Holter test readings.
I have a diagnosed type of Chronic Dysautonomia, I might be able to give you some suggestions for other medications to discuss with your Cardiologist used specifically for this issue. Beta blockers and things like Amitriptyline etc. do not necessarily work for everyone for these conditions if your BP is low as they do have some effect on your blood pressure .
You can take 3-4000 units a day of Vitamin D if you are low , Best taken after your fattiest meals with Vitamin C for the maximum absorption. Your iron supplement can be taken at this time too.
Try a dose of a daily tablet , and a separate dose of BetterYou spray containing Vitamin D , K2 and Magnesium.
Solgar Gentle iron is active iron is more easily absorbed and doesn't have the same stomach side effects of Ferrous products.
Take with vitamin C after food for better absorption.
Still take a daily B 12 and a Folate even with injections , the B 12 is better taken without Vitamin C after a snack like a small banana or yoghurt with lots of water.
Have you had an Active B12 blood test instead of a Serum B12?
This tests if you have enough functional B12 in your blood stream rather than just the total B12.
Some people have problems with functional B 12 and can need more regular injections than others.
It could be a cause of the remaining Vitamin D and Iron level issues.
All the issues together could be effecting your heart rate , weight loss , hair issues etc.
Were you tested for Pernicious Anaemia?
What reason do you have to be worried about Adrenal issues ? Have tests shown an issue?
Specialists will ignore people whom discuss Adrenal Fatigue. They are sceptical about the causes and the term which is mainly used by Health and Holistic websites rather than by clinicians. The terms they use are Adrenal Insufficiency, Adrenal Resistance, Adrenal Dysfunction and then more specific terms that discuss the injury or hormone / enzyme issue that might be effecting your Adrenal Dysfunction can occur for many reasons which are not all caused by the Adrenal Gland itself.
Some symptoms that we are concerned to be caused by Adrenal Function are often caused by Autonomic Nervous System Dysfunction instead , but the symptoms can be identical and unfortunately the doctors know very little about that.
Let me know about the cardiac questions and I may have some suggestions for you.
I did have light-headedness when standing up no breathlessness seemed to happen when I had prolonged days laying on the bed.I seem OK now they have suggested POTS then not considered it.Ive always had a faster HR.During periods of stress I seem to gave bouts of it.Was on propranolol 40mg for years with no BP problems but I was alot bigger in weight.BP in January was 114/80 I'd lost 2 stone by then.Problems seemed to arise after the bigger weight loss dropping Propranolol from 40 to 20 hasn't made much difference but cardiologist has suggested stopping it and see where we are at.but anxious doing that in case my hr goes nuts.When I was younger and thinner never had a problem with my BP.cant lie completely flat I go dizzy.
No other medications tried.Been told my 7 day hr test showed no arrhythmia just a few ectopics which is apparently normal.echocardiogram normal
Going to see cardiologist next Tuesday.
I have cold feet but they never go blue or white.
My GP did a cortisol 9am blood test and it was high range 133-537 twice and my levels where 668 and 747.i have white fluffy facial hair and a few spots round my face they suspected cushings but my symptoms matched Addusons low BP,weightloss etc so they did the 24 hour urine and SST test.The SST test showed my adrenals are in very good working order.Endo refused to do further testing.An worried that he's not been thorough enough and dismissing me.Not much more I can do .potassium and salt levels normal
Active B12 has been tested normal middle of the range.homocysteine and parietal cell also been tested and normal.
It may well be an idea to ask your Cardiologist to look further at P.O.T.S.High heart rate with normal to low BP can also be common with various disorders that effect your Autonomic Nervous System function like connective tissue and Hypermobility disorders , malabsorption issues , fibromyalgia, Chronic Fatigue Syndrome and thyroid dysfunction.
Unfortunately, even the Cardiologists and Neurologist have very little knowledge about Dysautonomia or P.O.T.S even though it is part of their field and if they reoccur they can cause a huge amount of symptoms .
If part of the cause of your high BP was linked to weight then it isn't surprising that your rapid weight loss will have caused the BP to drop and for you to need less or no blood pressure specific medication. Weight loss , functional vitamin and salt deficiency, and high heart rate can be a vicious circle and if you are regularly tachycardic that still needs to be addressed. There can be many reasons for this , however, which do not necessarily show up in standard blood tests , scans etc. as the cause may not be mechanical but related to release of enzymes / hormones or macro Neurology.
I have Sinus Node Reentrant Tachycardia with intermittent Orthostatic Hypotension, it never showed up on scans as the electrical nerve fault is so tiny and its effect instantaneous. It took three different Holter tests with me learning to do a poor man's tilt test at a given time in my diary and a knowledgeable electrophysiologist to spot it.
Try looking up the factsheets for diagnosis and range of treatments available for P.O.T.s on the POTSuk website.
Also try reading up on facts on the Dysautonomia International website.
These sites also include recommendations for doctors and specialists with more knowledge of diagnosing and treating these conditions which you could try to be referred to or visit privately.
If there is one in your area whom works for the NHS as well as privately you can choose to have an introductory private consultation and then ask for them to add you to their NHS book.
If it appears to them that there services are what you really need they will do that.
It fast tracks your care and gets you the tests on the NHS that other less knowledgeable doctors may not even think of doing.
If your symptoms are P.O.T.S like they usually try preventative measures first. If your salt levels are not high the first measure is increased water intake , especially drinking just before changing positions after a long time and throughout physical activity and a small increase in salt intake.
Wearing compression clothing , especially tights , leggings or armlets also improves blood flow from the extremities which stops the heart having to work so hard to maintain blood pressure as your body tries to pump blood back to the heart on standing or sitting up in a chair.
Maintaining a steady temperature is also important.
Eating healthily and having smaller meals , 5 portions a day instead of three big ones which taxes the autonomic system also helps.
Alcohol , smoking , artificial sweeteners, over processed foods and too much processed sugar are definite no , no's.
Relaxation breathing in general before getting up or doing exercise, or the valsalva method when HR spikes , can give an instant effect to the heart rate with little to no effect on blood pressure if heart rate is the issue.
Being mindful of your breathing and maintaining slow , deep breaths during activity also improves the symptoms.
Gentle moderate exercises which don't involve to much postural change, especially to the head , like walking on a flat surface , tai chi , using a recumbent bike , swimming or aqua exercise done inside your comfort level and very gradually built up over time also improves heart rate issues related to reduced activity caused by your symptoms.
After trying the prevention techniques for about three months , if symptoms persist or get worse , trying to establish which pathway this is caused by means you can try the drugs that have chance if the most success in combination with your prevention techniques.
Some people with tachycardia but no blood pressure issue can be helped by a Betablocker but many are not as the blocker reduces both issues. Sometimes , in my experience for example , Betablockers actually increased my heart rate as the heart desperately tried to work even harder to correct the low blood pressure dips.
Some people need testing for Adrenaline issues and adrenaline regulating medication can help.
Some need refering out of area to the Dysautonomia Clinic if they are not getting further with their problem , your Cardiologist can do this for you if you are in England. It is in London , but they know the right neuro and cardio tests to do to properly assess you. Unfortunately, most Doctors don't even note heart rate and only concentrate on BP readings and have no knowledge or training in doing the Dysautonomic testing even at Consultant level. It's an area of medicine which needs to be urgently addressed .
Many people find a type of antidepressant, prescribed off book ( not for depression ) creates the right effect on Autonomic function to also reduce heart rate.
Ivabradine is a drug commonly used now to treat dysautonomia and P.O.T.s by Cardiologists with some knowledge of P.O.Ts, it reduces heart rate without effecting blood pressure.
For some people , poor circulation caused by laxity ( less strength) in blood vessel walls or poor neurological signalling can make the need for medication which constricts, or dilates , the blood vessels useful . I personally take the less well known medication, Midodrine Hydrochloride for this reason and it works well . My cardiologist prescribed Ivabradine at first but it wasn't enough , he knew nothing about Midodrine it was my research that finally got this prescribed. Since taking I had a lot of improvement , including in my malabsorption and digestion and my pharmacist informed me that he had suddenly started prescribing it to a number of patients , so my visit to the Cardiologist seems to have borne fruit for other people too. I now take 50% less Ivabradine and Midodrine with better results.
Although you do need to make sure you don't lie down after the dose for an hour as this can bring on increased blood pressure.
Other circulation specific medications are often more successful for these issues than first line Betablockers .
Try looking up the websites and make print offs for your appointment of the summary of facts it may get you a step further.
Wow alot to think about.Been to see a neurologist privately useless he mentioned maybe FND due to stress but who knows.Just been referred to nhs neurology as private one event hough he works for nhs in my hospital wouldn't do that.Seems to be the norm it's not automatic to get on the books now.Could be disautonmia but it sounds scary have to wait for neuro.paid thousands on seeing different specialists with my symptoms but nothing.Weakly positive ANA dismissed by private Rheumatologist as I've had quite a few autoimmune tests being negative.who does the disautonomic tests neuro or cardiologist? Last cardiologist I saw just did the 7 day tests and recommended medication at my GPS discretion.I have a fatty liver any kind of antidepressant can exasperate this.ive written that medication down. Thank you
Tilt table test.Reassessment of previous Holter tests results concentrating on unusual swings or changes in P waves / Sinus rhythm activity can help .
Dysautonomia testing , details of the different tests for nerve conductivity , muscle strength and response etc. are on the Dysautonomia pages . Breathing tests , like testing heart rate whilst doing the Valsalva breathing technique can show a big change in heart pattern.
Be prepared though , most Consultants don't use or know much about these tests despite how easy they are to do in a clinic setting with very little equipment so they are unwilling to try them in case it highlights there lack of previous experience in the test area.
Of course , if they looked it up and tried it they'd get more experience and possibly reduce the amount of more expensive tests being done which are inappropriate to find the root cause many manageable Cardio neurology issues.
It is a matter of luck rather than thorough examination therefore that can cause the delays in getting P.O.T.s and Autonomic diagnosis .
Insist on biopsies for other functional malabsorption issues too including ones for fats and vitamins , like Pernicious Anaemia, Mixed Connective Tissue Disorders , Lupus , Lyme's Crohn's and Ulcerative Colitis, H. Pylori bacter and S.I.B.O and Bile Absorption, all of these can impact on general health , other health conditions and cause weight change. Most can have negative blood test ( seronegative) results for certain patients but can then be picked up in examining cells on a biopsy.
Salt and potassium levels have always been normal. I told endo that my BP is low in the mornings (cardio tests confirmed this) but on average my BP is normal side of the range.104/66 BP was 82/64 whilst I was laying down.Even prior to my big weightloss my BP was always normal.Dont understand after weightloss it went low
my cortisol was negatively affected by low T3. As soon as I introduced T3 twice a day my cortisol level shot up. Prior it was under range. It was all down to poor conversion from T4 to T3. Have you checked how well you are converting.
Sending you big hugs Paula1710 . The best thing I ever did for my absorption problems was to stop the PPIs. Be aware that you will get rebound problems as this article explains:
I tried to reduce it to 20mg omg acid terrible so went back to normal dose.Thought I'd try to go without due to upper endoscopy it's made no difference Was getting acid taking the ppi.Got hiatus hernia and GORD hard to know what to do for the best.Been having gaviscon.Was told at hospital that interferes with iron absorption too.So I'm putting up with the acid just gaviscon advance once at night drinking plenty of water too
Hi, just a thought re absorption, that you may find a pre-digested amino acid useful (I use Allergy Research Group/Nutricology Free Aminos). I had lost quite a bit of weight (although not so much as you), hair loss, reflux - I quit the PPI, gave up gluten and dairy (one at a time, got an improvement each time), started using apple cider vinegar or lemon/lime juice with meals, added magnesium (on skin), reduced FODMAPs and added amino acids. Then noticed that I was starting to absorb oral supplements again. Hair and nails grew, weight up again, brain less foggy etc. Best of luck.
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