Thyroid UK

My 26 year old daughter is very sick, please help!

My 26 year old daughter is very sick, please help!

My daughter has suffered for the past 10 years with terrible chronic Anxiety/Panic Attacks, insomnia, pain in her joints, Chronic diaharrea, stomach pain from dairy and gluten, always freezing and then hot flashes during the night, PMDD, ADD, terrible brain fog!! CHRONIC FATIGUE! Eczema, jaw pain, pain from Scoliosis. I posted one month ago and She got blood work done and I am now posting results. The gastrointestinal dr read labs and said she doesn’t have Celiacs disease and just to clean up her diet.

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I can only see FT3. Were the following done:

TSH

FT4

Total T4

Thyroid Peroxidase antibodies

Thyroglobulin antibodies

**

Vit D: 34ng/ml - This is a bit low. The Vit D Council recommends a level of 40-60ng/ml

**

Ferritin is low. I can't read it properly but it looks like it's 20something. It needs to be half way through it's range.

**

B12 looks like 410. This should be at least 550, preferably the upper end of the range.

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FT3-3.6, TSH 1.1, Ferritin 28

I gave my daughter the list of tests to order at The Gastro Dr. and they didn’t order the others, probably they didn’t have the proper codes!

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TSH and FT3 results are not enough on their own. To know if her problem is thyroid related she needs to have a complete thyroid panel all done at the same time

TSH

Total T4

FT4

FT3

TPO antibodies

TG antibodies

Her Ferritin must be raised to at least 70. Here in the UK with a level of 28 with that reference ranges, a GP may not be prepared to prescribe iron tablets. I always suggest eating liver to raise Ferritin, as well as other iron rich foods apjcn.nhri.org.tw/server/in...

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You know something, I had insomnia, pain in joints, chronic diaharrea, stomach pain, always freezing and then hot flashes (mine were actually fever) during the night, terrible brain fog, CHRONIC FATIGUE, very dry sky with eczema, jaw pain, back pain + tachycardia, hallucinations, extremely irritated and zero sex drive when I was about to crash with untreated/undiagnosed Graves/Hyperthyroidism...

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Sounds like me before diagnosis of hypothyroidism...;( awful

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Can we talk about how your doing, your journey, what you did to get better!!

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Can we talk about your approach’s to getting better please!!!!

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Wow, sounds just like my daughter! Can we talk about what you did and your journey?

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Please can we talk some more!!!!!

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Yep, tuck into that Spinach & Lentils and Nuts (Cashew nuts, Cashew nut butter etc)..

Eat bowls of Quinoa with Mixed beans (Red Kidney Beans, Pinto Beans, Cannellini Beans, Borlotti Beans, Haricot Beans), packed with nutrition. You can buy tins of mixed beans on Amazon, I get the Morrison's brand with the above beans in it.

Eating bowls of the above, who needs Iron supplements? :p

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That’s, good advice!!! Thanks!

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First look at support for the adrenal glands. Nutritionist will help with that. Because of trauma cortisol level can be also out of balance. avoiding dairy and gluten really helped me and I am a 73 year Nanna with so much energy Love to all

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Thank you Nanna!

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Definitely low Vit D and ferritin. She needs to to supplement iron (take vit c alongside it) and also a high strength vit d3. When supplementing Vit D it's important to also take vit K2 to make sure the vit D goes to the bones where it's needed. You can get some Vit D supplements that also have Vit K2 added.

other than that I'm afraid I can't help as I can't see any Thyroid related tests.

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She did TSH and Free 3

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Definitely test TPO and TG antibodies

Only tested for coeliac antibodies there

It's extremely common to be gluten intolerant but not coeliac. It can be as serious as being coeliac, there's just no current easy test

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

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

chriskresser.com/the-gluten...

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

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

thyroidpharmacist.com/artic...

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

thyroiduk.org/tuk/about_the...

ferritin is extremely low. Vitamin D a bit low and B12 borderline

Low stomach acid can be an issue

Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

thyroidpharmacist.com/artic...

drmyhill.co.uk/wiki/hypochl...

scdlifestyle.com/2012/03/3-...

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Thank you for your time and wisdom. What about the TSH levels and free T3?

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They seem absolutely normal

But low vitamins and or gluten intolerance and leaky gut can be hidden issues

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Nice list!👍

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Was she eating gluten-y foods before the test? Because if they make her ill, I would have assumed she’d already stopped eating them before the test? Or did she reintroduce them before the coeliac testing?

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Have you taken her to a rheumatologist. I am worried about the joint pain.Maybe a new profile of doctors may give altogether different opinion. Good luck. Seeing your child hurting I know is painful. Good luck and I hope you get answers soon. Take care and God bless you and your daughter.

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I am concerned about the joint pain and fatique. H

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I am concerned about the joint pain, So sorry to hear that. It is painful I know for you to see your child hurting. Have you thought about seeing a rheumatologist. Maybe a new profile of doctors, who looked at the situation differently might give you answers. Hope this helps and good luck. I will pray for you and your daughter. God Bless You both and hope you get some answers soon. You both have had enough suffering.

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Hello Janellepowell, I so felt ill reading your header to your post as a 26 yr old is ( in my opinion) JUST STARTING to live the fullest part of life!

I SOOOOOO feel that this isnt just thyroid hormone but a mix of what we females deal with all our life.

Dr.Sara Gottfried is a brilliant lady doctor that thru her teachings I got myself back from the depths of raging Hashimotos ( TPO in the 800's) to half following her protocol.

And Im 50!!

Here is a link where she's a guest speaker ( seeing & hearing is so much more than solely reading😊)

I do wish BOTH you & daughter well soon!!! Hugs🌸🤗

kriscarr.com/blog/hormone-i...

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I would start by looking not only at everything she eats but primarily at what her cookware is made of

Far too many people use toxic aluminium or non stick coated pans when they should only use stainless steel or cast iron or glass ....check and double check nd that means those awful pod coffee makers too

Also phone the water supply company and see if they are treating the water supply with flouride or any form if aluminium salts .... aluminium is a very very potent cause of severe digestive problems and joint pains etc ...do not let anyone tell you otherwise

This also means cleaning up her diet to only include fresh fruit, vegg, meat, fish, ...remove all gluten /bread...biscuits ..cakes etc and see if that helps ...if the problems remain remove milk and dairy

It will take time and persistnce to find out whats causing her issues ...the paleo diet would be a good way to start ....

Obviously a referral to a rheumatologist to get tests done to rule out RA or Lupus etc is wise but I bet a large part of her problem is cookware and diet

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Couple of other thoughts

First step is to test thyroid antibodies. You can have high antibodies and absolutely normal TSH, FT3, FT4

Just to complicate matters apparently 20% can also have Hashimoto's and never have raised antibodies, in which case it's diagnosed by scan of thyroid (appears granular in scan)

Has she ever had Glandular fever (Epstein Barr Virus). This can be cause of Hashimoto's

Other possible infections can cause problems too

H Pylori, SIBO, etc - see these links

A good nutritionist might be helpful

thyroidpharmacist.com/artic...

drhedberg.com/epstein-barr-...

hypothyroidmom.com/hashimot...

drchristianson.com/epstein-...

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I had all those symptoms (except from the anxiety/panic thing) when I was about to crash from untreated Graves/hyperthyroidism. It was hell for over six months until I crashed in what a doctor called Thyroid storm... I can't help but thinking about a hiding Graves...

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Hi

Great information here.

Sometimes you have to rule things out before you truly know where you are at.

Totally agree with going gluten and dairy free- no you don’t need grains or rice. My nhs test came back as a no but my private one a yes for coeliac. It does not matter- intolerant or allergic still has a reaction.

Yes vitamins are low and need a lift. Hashimotos is a must test with the full range of thyroid.

Glandular fever should be a must test- Epstein Barr virus is v v nasty. If there are high antibodies like say 600 can cause inflammation hashimotos cancer and ME. (Sarah Myhill- link provided previously talks you thro pretty much anything- mitochondrial function adrenal issues— cortisol and dhea ,which do need ruling out diet and vitamins)

Where is an esr or a ck test if she’s in pain? Without those being high there is no point seeing a rheumatoid specialist. Those are basic tests the gp should have done.

It is important to take care what you cook with- glass or porcelain.

It’s a massive leap of faith but I have come across one patient who had those symptoms and had a chromium deficiency- v v rare. It’s worth a try at least if only to rule it out after going gluten free and increasing vitamins.

Regenerus do saliva cortisol and dhea tests- approx £130- takes 3-4 days. I’d consider it after the other changes.

Best wishes

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Sincere gratitude for your time and wisdom. Thank you!

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I had chronic yersinia enterocolitica with all of those symptoms so there are so many bugs that cause variety of symptoms. YE can also trigger graves/hashi. To me it did trigger some type of thyroid malfunction. So infections should be ruled out like you said. If root cause is not treated then nothing works.

In any case where one suspect bacterial infection or SIBO should NOT supplement iron as it can worsen the condition. I had lowish ferritin but my doctor forbid taking iron until I had started natural antibiotics to prevent possible bacterial/yeast overgrowth. Then I could move on and take iron with iodine which works as antibacterial remedy as well. Most iron supplements that come as a pill dissolve in small intestine feeding bad bacteria.

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Wow, that’s some great information and warnings!! I can’t thank you enough!!

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Hi Slowdragon!! What is the therapeutic amount of Vitamin B12 for Lauren. Her blood test came back low!

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Hi, I agree with others that Vitamin D is low as is ferritin. I would also add in K2 and magnesium (not oxide).

Ask for a referral to a rheumatologist for the joint pain and fatigue.

Will she go gluten and dairy free? Easier to do one thing first I would suggest.

For the stress/anxiety try herbal tea blends , even just camomile- but use two - four teabags and make sure it steeps for 20 minutes. Drink 3-4 cups a day. Add a pinch of rosemary and or sage ( cover if do or will lose essential oils in steam) this will help with memory. Nettle would also be good - can pick soon as starting to grow. High content of vitamins and minerals. Lots of recipes online for soup etc but tea excellent

Before a meal, try using something like Viridian’s Digestive Aid.

There are a number of herbs that may assist but for complete care, see a herbalist.

Jo

Student naturopathic herbalist

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Thank you so much for your time and advise!!!

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How much B12 should she be taking. It came back low!

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Hi - what did it come back as and what has the doctor said? If low then they should be giving her loading injections, alternate days, 6 of them. unless she has neuropathy and then it should continue alternate days until improvement is seen.

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Oh I had no idea. She went to gastro dr for digestive issues and she asked him to do the suggested labs but he has no idea what to do with the results. So she needs to make an appointment with Endrocronologists to get him to read the results. Right?

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Her B12 is 410 and the range is 200-1100

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Her results at 410 have come back well in range as far as the doctors will be concerned. If you are happy to do so and have the means, before she starts any supplementation you could explore further tests - methylmalonic acid and homocysteine. They will roughly be £99 each (Medichecks) - or contact nutris.viapath.co.uk where they have new products available - at extremely good value i suggest. I would go for either of the two more expensive ones. These tests are at Guys/St Thomas's in London. This will enable you to see if there is a B12 deficiency at cellular level. A very good place to start. Then come back with the results. :)

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We are in the states! We have already started supplementing D @ 10,000 iu and Vit B Complex and omega 3 oils! She is very low in iron but haven’t started it because she isn’t good at taking supplements and we’re a bit cautious on supplimentingbiron because her co-worker warned her that when she herself started supplementing Iron it gave her horrible diarrhea to where she couldn’t work!! My daughter just got her first job 14 months after college graduation and is apprehensive. Any thoughts!

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28 and the range is 10-154

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Bit far to come to London then!

Iron, i'm not that knowledgeable with - take with vitamin C to aid absorption.

Support her digestion as I mentioned originally. Take her to a herbalist or similar. They will help.

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Thanks! I just posted my lab results!! Titled, “I’m the mom of the earlier post titled “My 26 year old daughter is very sick, please help!” Now I need your help!!

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Image-1.jpg

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For low B12 she probably needs a haematologist

Ask on PAS healthunlocked- they are B12 experts

But if you can't get injections (results not low enough) daily sublingual B12 lozenges will also work

Using test of Homocysteine levels to check for low b12

b12-vitamin.com/homocysteine/

Good explanation on homocysteine

veganhealth.org/b12/hcy

Oral may be as good as injections

aafp.org/afp/2003/0301/p979...

B12 generally

drjockers.com/warning-signs...

She likely has gut malabsorption or low stomach acid

drmyhill.co.uk/wiki/hypochl...

scdlifestyle.com/2012/03/3-...

Gluten likely an underlying issue too

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Joint pain could also be low Vit D

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I work with celiac all the time. The tests are so bad that they are not even accepted by the medics who do them. She sounds AS THOUGH SHE IS EITHER CELIAC OR HAS lYME'S. tHE FIRST THING TO TRY IS no GLUTEN AT ALL. THE AMOUNT ON THE TIP OF A PIN IS ENOUGH T DO IT. so NOT A BIT OF GLUTEN AND NO DAIRY AT ALL The 2 often got together and it will be 3 months before no gluten kicks in to make huge changes.

I have worked with this for a great many years and have in less gluten or less dairy does nothing and the testing is worse than useless.

It is so very easy now to go gluten free but you should never just go to tons of food that had gluten where it has been taken out. Corn is OK and rice but you want few grains in the diet.

lots of meat fish eggs cheese and veg and fruit.

if you want to message me please do.

If it is LYmes I can tell you alot but if she is lactose intolerent is it more likely to be gluten. Yes raise the D for sure but if it is celiac she is not absorbing nutrients. So use D and B12 sprays that are absorbed by the mucosa.

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Wow, thank you for your time and your advice! I will read and re-read!!! Sincere gratitude!

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you are most welcome. Do message me again but I do think it is the place to start, After all if it is not gluten causing it it is an easy thing to rule out and then you know where to look after that But it means no gluten

at all.It is in most prepared foods . itis the protein in wheat barley rye and oats. and it is added to all kinds of prepared food.. even ice cream and cold meats.

Just go on celiac sites or keto sites and look. There are lots of lactose free mild now. Almond coconut or lactose free cows mild.

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Bone broth is a simple start. Very easy organic chicken carcass slowed cooked in water for 24 hours or more and drink. All good wishes to you and your daughter.x

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Thank you, what does bone broth do?

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Dr Lam on google explains about bone broth. I find his site very good. Take care. Organic blackstrap molasses drinks and oily fish is what I started off my daughter off with when she crashed.

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Izabella Wentz, She's a pharmacist that was really sick( sounds like your daughter ) she was diagnosed with Hashimoto's and with diet she was able to get better. She also is the author of a book on her recovery. Look her up You Tube and see if her advice is helpful .

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Excellent, thank you! I will!

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I am really sorry for you girl's health struggles.

I am not going to read the tests because I am not a specialist but when I was diagnosed with Graves Disease I had all the symptoms your daughter is having. Then I went into something the doctor called "Thyroid storm", which is some sort of extra heavy inflammation of the thyroid due to untreated hyperthyroidism. But my thyroid was growing and I came out of it with a very enlarged goiter...

I am not saying your daughter has Graves, just reminded my own story.

So, what I would advice is:

1. More than 10 years of stress, anxiety lead to panic situations mess up a persons life and certainly lead to a lot of physical effects and pain... so maybe it is all a reflection of the anxiety mix.

2. In that case, if she uses/used any medication for anxiety, check them out. The medications used for stress, anxiety, panic etc... have serious physical effects and joint pains, fatigue, gastrointestinal problems and brain fog are regularly listed as part of those drugs side effects. Even hallucinations and nightmares are included in some of the side effects of those drugs. If she is taking any of those meds, read carefully all the information on patient leaflet.

3. If she is taking any of those "polemic" drugs ("polemic" meaning, drugs that have more side effects than one should be able tolerate) review the need of those meds by going to a new psychologist or psychiatrist or by trying alternative therapies, pain management therapies, without drug, is a good alternative.

4. Celebrate that she is not celiac or allergic to anything, celebrate her good test results... keep looking for other causes outside the box of food allergies and food intake. Vitamins play a role, focus on covering the important ones well but avoid multivitamins... focus on having the best blood tests...

5. Once the blood tests are cleared you have to live with the fact that the source of her pains are more abstract and more complex... you will have to learn how to help her move forward.

6.Try to control yourself in from of her. Try to calm her and don't let your worries stress your daughter even more. Enjoy every minute with her having fun, films, jokes and take things easily. Study life style changes, move cities, help other people, make wise calm decisions. She is young and she can start everything again. Don't worry too much about details, missing school, job etc... focus on the big picture, getting her free of pain and her energy back...

Good luck, we are here for you.

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Wow wow wow, thanks for all of your insights and the time you have to us! I will take everything into consideration! God bless you!

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Why did you say not to take a multi vitamin?

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Just wanted to re-iterate the main bits of advice you've been given:

Treat the vitamin deficiencies (there is good news with this, as she will probably get some improvement with symptoms.

Treat possible low stomach acid with apple cider vinegar or betaine. Go for supplements that avoid the stomach where you can - good B12 supplements also dissolve under the tongue.

Demand to be referred to rheumatology

Get tested for Epstein barr (glandular fever), and look into other infections like H Pylori, Lyme, SIBO.

Go gluten free, dairy free, and a low grain diet.

I think that is everything that was suggested, I may have missed some. But it's a lot to be going on with.

I would also suggest, if you share test results in the future, to type out what you want people to look at,, even if you include a scan alongside. Most people on the forum will be in a hurry, and only look once. I think most people in this thread didn't see your daughter's thyroid results, so you're missing out on a lot of expertise.

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Excellent advice, thank you!!!!

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I experienced pain from cholesterol medications and had to stop taking any of them. That may not be her case but worth looking at. Also, I am today ordering either the 20 or 25 lb. weighted blanket to see if it will possibly help my husband who suffers terribly from severe fatigue, anxiety, and depression which none of his medications have helped. I am praying it will help. Pursue the battery of thyroid test since a partial reading does not tell the full story. Good luck!

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Wow iam so sorry to hear that. Has she had a full lab work up. I have some of what she has to. I have meds to take for my panic attacks. I also suffer joint pain and my dr told me its my menopause. I will pray for her!!

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Oh thank you for the prayers, that’s so meaningful to us!!! Did you get your Vitamin D and B12 checked and did you supplement and did that not help your anxiety?

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Has your daughter had tests (not just the NHS ones)

for Lyme disease?

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No! What’s NHS?

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I have had Lyme disease and the symptoms you are describing sound just like it. The National Health Service Lyme disease test is well known to be very poor but there are much better private tests done in America and Germany. People with Lyme often develop Hashimoto's Thyroiditis. I have found the ketogenic diet to be very helpful. See Dr Sarah Myhill's site for more information.

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I like your joke what's NHS my thought entirely!!

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I do take vitamins and have for years. My dr gave me the meds for panic attacks. I only take them when i need to. I have hyperthyroid/graves.

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Thank you!

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Stress plays a role in panic attacks and i learned not to let things stress me out because i also have high blood pressure and take 300 mgs a day now. I will keep her in my prayers everyday!!

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Replying from across the pond- has anyone considered or tested for Lyme's Disease. It probably is not common in UK but the joint pain and brain fog are common Symptoms

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We have not, but I will test her. Thank you!!!!

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More people have Gluten Intolerance than Celiac disease. Currently I don't think there is any standard test for it.. Before she had the blood work was she consuming gluten for 2 weeks before? If it was removed from the diet and she was celiac the test would be negative..

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B12 - 410 is actually quite a way into the normal range - assuming that you haven't supplemented yet then, whilst it is possible that there is a B12 absorption problem its a bit unlikely. What would be useful is to rerun the test in a couple of months and continue to monitor to see if levels are dropping - which would show a B12 absorption problem.

However, being in range doesn't rule out problems metabolising B12 as a cause of the symptoms - though this isn't an area that GPs are particularly aware of and isn't necessarily something that is easy to identify without genetic testing - looking at MMA might help to clarify as an indirect measure of how cells are using B12 - it will tend to be high if cells don't have enough B12 to recycle it.

ferritin is only one measure of iron status - others are haemogolobin and the the red blood cell measurements in the full blood count which all look okay so I would be more cautious about assuming that there is an iron deficiency - particularly as too much iron can also cause problems.

Vitamin D deficiency could well account for many of the symptoms mentioned.

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Wow thank you for your view on her iron situation! She did not supplement before Taking the labs!

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How much B12 would you suggest!

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