HASHI'S, HISTAMINE SENSITIVITY, THYROID

[kaylee4848]

Hashi's, just learning about histamine sensitivity foods and drugs, I am gearing up to go on a histamine free food and drug diet, but have more questions than answers. I can give up the foods, but some of my meds are definitely on the histamine list.

Background, born with pituitary tumor, I was always "different" but when you grow up that way you do not even realize it. I am SO tired, my thyroid meds since moving to France 5 years ago have been lowered and lowered. I don't sleep much and never had even as a baby, a good night is 3 hours for me and that is with using a sleeping pill. It has to do with the tumor - nothing to do with my lifestyle, believe me I have read and tried everything under the sun for sleep, I do take melatonin, 5htp and L-tryptophan which all help to make people sleepy. I saw an allergy doc yesterday, she has never heard of DAO or a test for it, I think I can order a test from Germany or maybe I should just order the pills and take them along with eliminating as much histamine from my life and see what happens in 2 months. I just learned that people with Hashi's have histamine sensitivity - I describe my head as a mucous factory, I wake up with my eyes almost swollen shut in the morning and my face very swollen - hey one good thing is, put on sun glasses and take a pic of a 70 yr old face and you have no wrinkles in the morning!!! The doc yesterday said I need to find another doc, I said who and what kind of doc? she said she didn't know - OMG if the doctor doesn't know how am I supposed to know? I saw an ENT who referred me to her. I could go on and on with all the symptoms I have, I just want to be a little bit normal before my life is over. I want some answers. But I don't even know who to see. Getting desperate and running out of time.

[RedApple]

kaylee4848, 'OMG if the doctor doesn't know how am I supposed to know? '

To find a conventional doctor that knows anything about this is a rare thing. Unfortunately, we have to be our own researchers and find out what does or doesn't cause our symptoms, and what approach will work for us as an individual.

' I describe my head as a mucous factory,'

'my thyroid meds since moving to France 5 years ago have been lowered and lowered'

If your thyroid hormone levels are not optimal *for you*, this will be a contributing factor to your mucous and swollen face.

You don't mention any gastro problems. If you don't have histamine related gastro problems, the DAO pills are unlikely to help. The last time I checked, they were very expensive, so maybe do the test before taking DAO meds. I can't recommend this test from personal experience as I've not used it, but it's one to consider. cerascreen.co.uk/products/h... Bear in mind their caution 'Caution: A low-histamine or histamine-free diet and the use of antihistamines within two weeks of taking the test can affect your results.'

histamineintolerance.org.uk... is a useful site. As it says on the page I've linked to, DEFINING THE CAUSE IS ESSENTIAL

[kaylee4848 in reply to RedApple]

I have had gastro problems since I was a kid, I do not and have never digested my food well, just started getting a little bit better since I started taking a multi amino acid pill twice a day - I have tried all kinds of digestive enzymes, OMG I could be rich if I had not bought all the supplements recommended over the years. When I found the article written by Dr. Isabella Wentz who has hypo/hashi's about histamine sensitivity it described me to a "T". she became and pharmacist and Dr. so she could figure out how to help her problem as she got no where with doctors. So yes I have gastro problems.

[SlowDragon Administrator]

If you have pituitary tumour your doctor must test TSH, Ft4 and Ft3….not just TSH

Always test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test

How much levothyroxine are you currently taking

When were vitamin D, folate, ferritin and B12 levels tested

What vitamin supplements are you currently taking

[kaylee4848 in reply to SlowDragon]

They now test for everything but for years my gp just did a tsh test and it always came back normal, he never even bothered palpitating my throat - I am lucky to have survived this doctor. But once I change docs the full panel was done and has been done since 2000. Though my tsh level due to medication and the tumor will always be suppressed and is useless .001 I take Vit liquid vit D3, liq. Vit B's, multi amino acids which have made the most difference, zinc, EPA/DHA essentiel oil, Adrenal cortex as I gained 44 lbs in 6 months when I was put on cortisone for adrenal fatigue, NAC which is supposed to be SO good for those with Hashi's but OMG it is on the histamine drug list. So many of the good foods and supplements for Hashi's are also on the no no list of histamine foods, drugs and supplements. I also take S. Boulardii probiotic and I am hoping that is not one of the bad ones for histamine.

In trying to help my Hahsi's I have just made my histamine intolerance so much worse!

[kaylee4848 in reply to SlowDragon]

Oh forgot to say I am taking 1 1/4 Euthyral which is a T3/T4 combo 3 days a week and only 1 the other 4 days. I used to take Armour Thyroid or NDT for years in the states, I still have some from 2018 and honestly feel like it might be better than this stuff. I was taking 3 armour a day in the US.

[SlowDragon Administrator in reply to kaylee4848]

Well that won’t work

You absolutely have to take EXACTLY same dose of T3 everyday

So any combination medication you must take exactly same dose everyday

Many people find it better to split the dose into 2 or 3 smaller doses spread through the day

Start taking Euthyral correctly and retest in 6-8 weeks

Are you on strictly gluten free diet

If not that’s next after getting thyroid medication correct

[kaylee4848 in reply to SlowDragon]

I did gluten free for several years and that did not seem to have any changes, it was a strict diet for losing weight, which is just so hard for me to do.

[greygoose in reply to kaylee4848]

Sorry, but you cannot dose Euthyral like that. It contains T3 and with T3 you have to take the same dose every single day if you want the T3 to do what it's supposed to do. You cannot alternate like you can with levo.

[kaylee4848 in reply to greygoose]

this is what the doc put me on..................sometimes I feel like they are killing us.

[greygoose in reply to kaylee4848]

That's exactly how I felt, which is why I now self-treat. They just do not have the knowledge to treat people properly. Honestly, the majority of doctors have no idea what T3 is, what it does or how it works.

[greygoose]

What you probably want is an allergologue:

sante.journaldesfemmes.fr/f...

They should know about that sort of thing.

[kaylee4848 in reply to greygoose]

I just came from the allergist yesterday, but she has never heard of DAO, yes I spelled it out for her, she cannot find that France does this test, nor who I could see to get this done or to even speak to someone about this. So I think it is just up to me - I will feed as much of the histamine foods to my husband, eat some of the, order the DAO and try to start and see what happens.

[greygoose in reply to kaylee4848]

Well, it's quite possible that that test does not exist in France. There are some tests I know they don't have. But, just because this one allergist didn't know about it, doesn't mean none of them do. They don't all have the same level of knowledge or understanding. If it were me, I'd try a different one.

[kaylee4848 in reply to greygoose]

I am going to try at the lab when I go for bloodwork tomorrow and see if they understand me...........

[greygoose in reply to kaylee4848]

Do you know the name of the test in French?

[kaylee4848 in reply to greygoose]

yes I spelled it out and translated it, she said she could not find it on her computer. So I just ordered the DAO several recommended, I have almost every single symptom on there for people who are sensitive to it so will try to eliminate as much histamine as possible, I can do all the foods on the list, but might not be able to do all the medications.