Confused With More Problems

[needtobebetter]

Hello, Christmas greetings to you all..

I havent been here for a while, following gluten free diet but still not feeling well!!

I was taken off the pill as getting menapause symptoms, no period over a year, loss of skin elasticty, dry skin, puffy face, fatigue, foggy brain, muscle weakness, depression, loss of muscle mass, belly fat but slim else where etc..

My results showed very low estrogen 6 months after stopping the pill and they sent me to a pituitary specialist. The bloods came back with my t4 13.2 (12-22) so it was low but NHS said all normal..

So after speaking to a few people I went to a private doctor and he said teh NHS dont test your T3 and your hormonal panel like we can. So I had a full hormone panel private and my T3 is low and all my hormones seem a bit low..

He has put me on 1/2 a gram of armour & DHEA said my thyroid is causing it all.

Then I had a scan of my ovaries and have lots of cysts and the london nhs hospital said I now need testing for diabtes and insulin resistance for pcos syndrome..I dont have oily skin, spotts of hairy body and i seem to be loosing weight (diet is quite restrictive though having to eat very low carb)..

The private doctor doesnt think I have pcos syndrome as my tesosterine isnt high..I am so confused just wondered what you guys thought as you all make much more sense than doctors!!!

IGF-1 : 20.7 range: 15.0 - 39.9

TSH: 0.68 Range: 0.27 - 4.20

Free Thyroxine: 13.2 range: 12.0 - 22.0

Free T3 3.5 Range: 4.0 - 6.8

FSH: 5.9 range folliclur 3.5 - 12.5

mid-cycle: 4.7 - 21.5

luteal: 1.7 - 7.7

post meno 7.7 - 58.5

Progesterone: 1.4 ref range folliclur 0.6 - 4.7

periovulatory: 2.4 - 9.4

luteal: 5.3 - 86.0

postmeno 7.7 - 58.5

for day 1 progesterone: >30ml indicates ovulation

<5 ml indicates no ovulation has occured

Testosterone 0.8 range: 0.20 - 2.90

Sex hormone binding Glob: 165 range: 20 - 130

17-beta estradial 159 ref range: folliclur: 46 - 607

ref range mid cycle: 315 - 1828

ref range luteal: 161 - 774

ref range post meno: <201

DHEA: 3.2 ref range: 0.26 - 11.0

CORTISOL: 101 (1.10pm) 9am 171 to 536 Midnight: <140

Thyroglobulin antibody: <0.9 0 - 4.9 Negative

Throid peroxidase <0.25 <9 Negative

Would appreciate your help guys. I am also now under Barts for my right side weakness and having a complex mri of brain and spine in January as he thinks something may be pressing on something other wise he doesnt think its neuro related but something is definatley causing it..he was ever so nice and annouyed at my dotors keep sending me to different hospitals all the time...

Thanks everyone

Big hugs

Mand

xxx

[Mother of Jibril]

TSH: 0.68 Range: 0.27 - 4.20

Free Thyroxine: 13.2 range: 12.0 - 22.0

Free T3 3.5 Range: 4.0 - 6.8

Thyroglobulin antibody: <0.9 0 - 4.9 Negative

Throid peroxidase <0.25 <9 Negative

Since your TSH is well within range and you're negative for thyroid antibodies, but your free T3 is below normal... I would say your pituitary gland is not stimulating your thyroid enough. The MRI might help. A visit to a good endocrinologist might help too. The adrenal-pituitary-thyroid cortex regulates your reproductive hormones, so that could explain why your other numbers are off.

Another thought... how is your intake of essential fatty acids? (Omega 3, 6, 9) Is your cholesterol low? People get so worried about high cholesterol that they forget about the opposite problem... a certain level of cholesterol is needed for your body to produce reproductive hormones.

[needtobebetter]

Since your TSH is well within range and you're negative for thyroid antibodies, but your free T3 is below normal... I would say your pituitary gland is not stimulating your thyroid enough. The MRI might help. A visit to a good endocrinologist might help too. The adrenal-pituitary-thyroid cortex regulates your reproductive hormones, so that could explain why your other numbers are off.

Another thought... how is your intake of essential fatty acids? (Omega 3, 6, 9) Is your cholesterol low? People get so worried about high cholesterol that they forget about the opposite problem... a certain level of cholesterol is needed for your body to produce reproductive hormones.

Hello,

Thank you for your reponse

Well, I use oilve oil with my cooking, I eat tuna and salmon once a week. I cant tolerate sunflower oil it blocks my nose and swells my belly dont know why so i do steer clear of sunflower oil..

Ive had high cholesterol several times but thats been mainly after being very down about not knowing whats wrong and going on a little binge chocolate etc..

I am now using flaxeed, oilve oil and taking cod liver oil and also trying to eat a few brazil nuts a day..I cant tolerate fat on meat i feel really queezy when i do ..

Barts - They are doing a complex scan of my head so I am hoping they will be able to see my pituitary glad to see whats going on. It seems crazy though I have been seing a pituitary specialist who has said my hormones are all normal!!?? Apart from not having periods and teh cysts..they have just scanned me and i have pcos, bu Iam not hariry spotty, over weight and my testosterone is certainly not high!! So Iam confused at how teh pituitary woman can say its all normal..

However she was testing me for hypopit - but didnt test my growth hormone so I questioned why she didnt test it and she said its not idicated at present??!! So, I dont know if due to teh normal T4 results she didnt go on to test me for hypo pit..I had my T3 tested privately ....

I am so confused..

Alos I was wondering could my hormones be affected by my diet with regards to iodine..lack off

Ive been reading and since I have swtiched my diet due to possible celiac I only really eat:

Sea salt no iodine

Eggs - 4-5 times a week

Chick peas, kidney Beans etc

Meat white, red once a week

Tuna every day, salmon once a week (fatty stuff makes me feel sick)

Brazil nuts

No milk - allergic

TRying to use soya milk more when i remember

Veggies

No fruit - get reactions with candida

So, I am going to go back to table salt and see if that helps as Ive read has iodine but hoped the eggs would be giving me enough??

Thank you

I am so confused and have so much going on. I had a sudden attack of right sided weakness last year which s why Barts are scanning me but he thinks if nothing pressing on anythingits due to something else..

Mandyxx

[Mother of Jibril]

Wow... that really is confusing. Your diet looks quite good, although with malabsorption it's possible that you still have some vitamin and mineral deficiencies.

One place you might try for help is this: Open Original Shared Link

[needtobebetter]

Wow... that really is confusing. Your diet looks quite good, although with malabsorption it's possible that you still have some vitamin and mineral deficiencies.

One place you might try for help is this: Open Original Shared Link

Hi ya.

Ha ha thats where I go for help Lethal Lee has been excellent..

I am apparently not celiac either!!! I had a blood test at the begining before taking foods out and was negative. The after homeopath candida diet doctor said do biopsy but had been on the diet and I had only been eating for the challenge : porrige and then 4 slices of bread at lunch as was trying to do low carb..silly moo lol..

Then it came back negative..but during teh 5 weeks of eating gluten etc I came off the birth control pill and my face started bloating out and other weird symotoms like sweating and stuff oh and my skin changed dry, loss of elesticity, pale and very dehydrated looking whith fine wrinkles on my cheeks ....I am only 32 years old..

So thats what makes me think its more hormones..I have read that fine wrinkled cheeks and pale skin is a sign of hypo pit and also growth hormone deficency...

I also had a car accodent a year before this all started and I had noticed the constipation and sinus allergies and some fatigue a while before it all kicked off big time 3 years ago after my operation for a big cyst in my groin!!!

I am a very complex pateint i think..

Thanks

Take care

xx

[ShayFL]

Let me offer this. With that TSH and that Free T3, it looks as Mother said that your pituitary is not working properly. A head scan is a good idea to look for a cyst or tumor near the pituitary.

With regard to diet: tuna everyday = A LOT of mercury. It has one of the highest levels. The experts recommend not eating more than 1 serving of fish like Tuna per week. Mercury inhibits thyroid. It blocks the uptake (and you dont have much floating around to begin with). Soya has anti-thyroid affects as well. And raw or undercooked cruciferious veggies inhibit thyroid too: broccoli, cabbage, cauliflower, bok choy, turnips, etc. Should be well cooked to not affect your thyroid. Chick peas are also a anti-thyroid. Also, flouride blocks thyroid hormone uptake. We get it in our water and toothpaste. I have not drank city water or used flouride toothpaste in over 13 years and I have not had a SINGLE cavity in that time when I used to get them regularly when I was downing the flouride everyday. So I have no qualms recommending people take that toxic junk out of their bodies. Tom's has flouride free toothpaste that is gluten-free. So does Jason. Chlorine will also fit into the receptor sites for Thyroid and keep your from getting what you need. I dont drink/bath in chlorine anymore either.

Fruit actually supports the thyroid and you do need some iodine each day. Sea vegetables are a good way to get it.

So while at a glance your diet looks "healthy" it may be quite anti-thyroid. To support the thyroid: Lean meats preferably free range and grass fed, raw butter, virgin coconut oil (really supportive), all veggies that are not anti-thyroid, low sugar fruits if you can tolerate them, and nuts, seeds, whole grains in moderation.

I have a Phd in Holistic Nutrition, so I know a thing or too. BUT please google EVERYTHING I have told you to learn more for yourself.

[AliB]

I see this all the time - gluten intolerant but not getting better on gluten-free.

There are a lot of us on here with similar problems. Some of us are following the Specific Carb Diet which cuts out the troublesome foods that many of us can't digest and allows the gut to heal properly, and getting good results.

Although you have restricted your diet considerably I can see that you are still consuming carbs that would be 'illegal' on the SCD, like soya (VERY mucous-forming) and chick-peas. Because we can't digest the long-chain carbs properly, the undigested carbs create a food source for the Candida which encourages its growth - and the growth of other rogue bacteria and/or parasites.

Candida will go in search of food, but if it cannot find a food source it will die back.

There is an SCD thread on the 'Other Food Intolerances' section and 'breaking the vicious cycle' and Pecanbread are good websites for more information.

[needtobebetter]

Hi,

Thanks ever so much..

Okay, I didnt realise about the chick peas I'll stop them and the soya milk then I dont eat raw veggies anyway..and see what happens. Ive gone right off tuna so only have a couple of times a week..

Surley, eating a few chick peas wont of caused my hormone problems?? I suppose what you mean is my diet is making the problem worse ??

I'll drop the chick peas, I just feel better with hardly any carbs and pulses dont seem to bloat me as badly. Praps ill try butter bean, flogot and lentils and stuff like that next then.

I did start drinking teh soya as it contained so many vitmains and Id read that it can raise etrogen and mine is very low and i am feeling symptoms from teh low estrogen and seeing them my skin etc..

Thank so much for your support Id love to become a nurtitionist when i am all better.

Ive just seen an oral consultant as my jaw is out of line, he said its due to my muscles in my face he said the muscles are very tense in the right side and has given me some antidepressant that they use as a muscle relaxer. I ve checked it to see if its okay with celiac, canddia etc and it is but i dont really want to take it to be honest..Id rather wait another two weeks and find out exactly whaqts caused it cause iam scared taking things when not diagnosed yet and i am seeing so many different doctors..

Thank, you advice is greatly appreciated guys..

Big hug

mandxx

[ShayFL]

You can eat chick peas, raw cruciferous veggies, etc. once in a while. You just dont want to be downing them everyday and a lot of them.

[georgie]

Would appreciate your help guys. I am also now under Barts for my right side weakness and having a complex mri of brain and spine in January as he thinks something may be pressing on something other wise he doesnt think its neuro related but something is definatley causing it..he was ever so nice and annouyed at my dotors keep sending me to different hospitals all the time...

Hi Mand, Your Dr is thinking Pituitary Tumours - make extra sure that the MRI ordered is for the PITUITARY and not just the brain, and also make sure contrast is being used. Small tumours can be missed otherwise. Be aware that long term Celiac damage can show as lesions on the brain MRIs like MS and Pernicious Anaemia.

Your Cortisol needs to be tested as close to waking up time as possible. It is normal for it to fall as the day progresses. But serum cortisol is not an accurate test. If there are concerns you need better tests such as the ACTH Stim Test , Insulin Tolerance Test etc which are done as a hosp day admission. In the meantime a saliva test done at home , in relaxed conditions, with 4 samples spread over the day - may show something.

And try to get the Hospital tests done before you start cortisone. Once you start cortisone a lot of the above tests are never accurate again. It is important to know this.

IGF-1 is not an accurate test for GH. It is hardly worth doing the test at all as it is so inaccurate. The ITT is the gold standard test - or a GH stress test . Once again - hospital.

A couple of good official links are www.pituitary.org and Open Original Shared Link Be careful of amateur sites with misinformation.

There are about 12 hormones the Pituitary controls and they can fail one by one gradually or suddenly. GH is often the first to fail and the last to be dx. And even if the MRI is perfect - you can still just have a non functioning Pit. Have you ever had a slight head injury ? Concussion/ car accident ?

Best wishes.... My hubbie has hypopit and it took 3 years for him to get through the tapes to be tested and approved and dx. He now has full hormones replacements incl hGH. Life is never the same but it can be a life. G

[AliB]

The problem Mand with soya, is that whilst in Japan they do eat it, it is fermented, like tofu, tempeh and miso. They also do not eat as much of it is assumed.

They do not use soy other than this way as traditional diet recognised that the beans had to be fermented like this to destroy toxins within them.

Modern processing does not do this, so Western soy products, not only are highly processed, but also still contain the toxins.

Soy is also a very common antagonist for further food intolerance symptoms.

This is an interesting website, if you are interested in knowing more about soy.

Open Original Shared Link

It is highly likely that you are suffering with gut dysbiosis and probably Candida and/or other pathogenic bacteria/parasites.

Eating any of the foods that keep the cycle of damage going and that keep feeding the pathogens and you will not get better.

Candida, one of the biggest culprits, can cause problems in any part of the body, even the brain. Whilst we are still feeding it, it will continue to flourish.

The SCD works because it has a two-pronged approach, not only does it remove the foods that feed the pathogens but it also encourages the replenishment of the good gut flora to rebuild the protection of the gut and support the immune system so that it can start to fight the little beggars.

By sticking to the diet we can eventually get the upper hand and our bodies then finally have a decent chance to start to heal.

One of the ladies on the SCD thread was saying that a cyst her doctor spoke about having to cut out, has now almost gone - she has been following the diet for just 5 weeks.

The SCD is not a permanent diet. It is not a weight-loss diet, although some do lose weight, or even gain it if they need to. It is a healing diet.

Although some find that they need to be on it for perhaps two or three years, eventually their body has healed and they are then able to resume a fairly normal diet - many even being able to eat gluten again with no problems. Elaine Gottschall, who has revived the diet reckoned that we need to be on the diet for a year after health has been restored, just to be very sure. Good advice.

Most find though, that the knowledge they gain makes them realise that the 'Western' high-carb, high-sugar diet very much contributed to their health issues and so are loathe to return to that lifestyle again. So they tend to stick much more to the natural foods, and just have a little foray as a treat now and again, rather than the all-day, every-day carb-fest as is generally common of those around them.

It really is about learning to 'read' your body and understand what it needs. The Western diet dulls our body's responses so much that the only signals it can give us is health issue symptoms. Many have had their tonsils out because they keep getting inflamed, not realising that they are inflamed because the body is trying to tell us that we are toxic.

That is like saying "I keep getting a headache - I had better have my head cut off"!!!

[needtobebetter]

Hello Thanks for your help guys...

Iam bumping this up again as Iam now waiting for a pituitary MRI scan...

The only thing thats confusing is my tsh is different on two sets of blood tests:

Thyroid Tests

TSH.....2.94 (0.27 - 4-20) OCTOBER

FT4.....13.6 (12.0 - 22.0) *only 16% in range

TSH:.......0.68 (0.27 - 4.20)NOVEMBER

FT4.........13.2 (12.0 - 22.0) *only 12% in range

FT3...........3.5 (4.0 - 6.8) *deficient

TGAbs.....<0.9 (0-4.9) *Negative

TPOAbs..<0.25 (<9) *Negative

October tests were done at 4pm which ive been told is not a good time of day to do it anay way and i had been drinking lots of coffee to function and smoking - i think this alters the test???

The second one NOVEMBER - was at 1.10 pm and i hadnt drunk any caffine..

I have beentold taht these tests shold be done in the morning really tahts when they are at there lowest and before drinking caffine etc????

If thats the case my November test would be even lower..

Thanks sorry only just come back to reply not been so good

xxxx