Hier noch ein älteres Posting in diesem Zusammenhang vom selben Autor "Imgeha" aus dem englischen Board:
http://p075.ezboard.com/fgilbertswebfrm1.showMessage?topicID=552.topic-------------
imgeha
GWMB Registered User
Posts: 45
(2/20/06 8:46)
Reply Gilberts / hypothyroid theory I have a theory I thought I'd post, and get your reactions. One of the main problems Gilberts sufferers seem to have is that doctors don't believe it causes any problems. I discovered I had Gilberts over 18 months ago, and I am still suffering badly - but not with Gilberts, rather chronic fatigue, or rather hypothyroidism and hypoadrenalism. In standard blood tests, Gilberts shows up, and is often casually dismissed by the doctor as a benign condition. Yet many of us suffer and cannot understand why Gilberts is ignored by the medical profession. I personally am devastated by this - I am a 39 year old female, struggling to bring up 3 small children with severe chronic fatigue, and have been dismissed as just having Gilberts.
After much research, I understand Gilberts to be due to an enzyme shortage in the phase 2 pathway, which operates sluggishly. I believe this sluggishness also affects other processes that are performed in the phase 2 pathway, including the conversion of the thryoid hormones T4 to T3. Low thyroid levels will affect the phase 2 pathway efficacy, as well as the adrenals. Anecdotal evidence from these boards leads me to believe that many Gilberts people suffer hypothyroidism, ie, the rate of T4 to T3 conversion is slow, and so we are cold and fatigued, have anxiety, possible hypoadrenalism (don't produce enough cortisol) and hypoglycaemia. Sound familiar to anyone? Heavy metals also burden the phase 2 pathway (got any mercury fillings? they won't help your Gilberts or your thyroid).
Some of us may end up on thyroid treatment (Synthroid, Euthyrox etc etc) but this does not solve the problem. As most of us have problems converting T4 to T3, giving us T4 alone will not help us much, and will possibly cause us to become hyper on a low dose. This happened to me at Christmas with a total adrenal crash. I believe a combination of T4 / T3 like Armour or Thyroid S will be much more helpful. I am about to start this treatment myself, and I will be reporting back on progress.
My theory is that so-called Gilberts symptoms - cold, fatigue, brain fog, anxiety, digestive problems, feeling lousy in the mornings, better in the evenings, headaches - are actually undiagnosed, and untreated thyroid problems. And we can try all we like to improve our liver function with juicing, milk thistle, liver diet, etc etc, and doubtless these will do no harm, but the real issue here may be hypothyroidism that may not show up on standard blood tests. Low thyroid levels affect the efficacy of the phase 2 pathway of the liver, and thus the bilirubin levels in GS sufferers.
How to treat hypothyroidism is a whole other medical controversy. Your standard GP will look at your TSH, and if it is over 4, prescribe give you synthetic T4 medications. Firstly,the TSH is meaningless - you need to get your free T3 and T4 levels checked - and even if these are within range but at the low end, it is likely that you will benefit from T3/T4 combo treatment ie Armour or Thyroid S. Have a look at these links for further info.
www.stopthethyroidmadness.com/www.thyroidtears.co.uk/introduction.htmlwww.riverhillwellness.com/thyroid.htmThis has been a lightbulb moment for me, and it might help others who are suffering needlessly with the Gilberts label. Gilberts should be benign. If it isn't, it is something else, and you need to look for other reasons. I propose that undiagnosed and incorrectly treated hypothyroidism may be the root cause for some of you. Hypothryoidism is described as a growing epidemic, due largely to heavy metal toxicity (amalgam fillings) and fluroidated water. Think it through and let me know what you think.
Nicola
kdhsgf
GWMB Power User
Posts: 103
(2/20/06 11:55)
Reply boost What not many ppl know either is the fact that iodine is necessary in our diet to continue good thyroid function, as the body converts it to the required hormone. Most salts don't add this, and the other likely source would be from eating seafood. As the sea is rich in it. I myself feel generally better after adding iodine to my diet. I just brought Sea Salt with added iodine on it and just add it like how I would normally add salt. Apparently many governments have made it mandatory that iodine be added to salt products. Imagine your body all this time without having a regular intake of iodine?
Of course if you are allergic to iodine don't take it, but ask your doctor anyhow.
Edited by: kdhsgf at: 2/20/06 11:56
piraterocker
GWMB Power User
Posts: 101
(2/20/06 5:51 pm)
Reply Re: Gilberts / hypothyroid theory Good work about the thyroid!
I feel that adrenals are effect phase 2 within the silly GS label. Also, all metals, nickel, lead, mercury are all much harder to get rid of for us. I have posted this before on here.
This guy did great research and tried alot and is 100% better now. It was multiple issues but thyroid t4/t3 was apart of it.
www.geocities.com/ctfutur...l#contentsthe part with mercury fillings takes about GS.
keep us informed at progress and how you feel. if you get too hyper and sluggish quick, anxiety etc and what was the best dose for you. i know it's matter of waves for me now. I'm taking IV Vitamin C high doses and glutamine to chelated toxins/ metals/etc out of me. and iodine is great for us.
doctors data is the best for metals testing.
keep me informed as much as you can about your progress. how you feel, if you get sluggish, anxiety, hyper, etc. on what dose works best for you,etc. i just want to be able to go a full week feeling good and not cold/ sluggish or toxic through the day. late afternoon and evening is when i feel it most.
imgeha
GWMB Power User
Posts: 51
(3/15/06 2:08 am)
Reply Gilberts / hypothyroid theory Thanks Piraterocker. I am absolutely convinced I am onto something with this. And this is why so many people with Gilberts suffer from chronic fatigue-like symptoms, which can actually be easily treated. I have just read a book about a woman who was hypothyroid for 23 years, and it wasn't picked up by the doctors because they go by the TSH blood test only, not the free T3 and T4 levels as well as clinical observation. She was totally debilitated, ended up in a wheelchair for years, and finally got a proper thyroid assessment. After taking Armour for 12 days, her brain fog lifted, and she recovered slowly. She is now completely fine. If you are still troubled by fatigue, despite good diet, milk thistle etc etc, get your thyroid checked!! No amount of healthy eating will replace the hormones your body needs to function properly. Hypothyroid symptoms are identical to Gilberts syndrome - the yellow skin, digestive problems, fatigue, feeling cold, anxiety.
I am now also taking a T3 T4 combination thyroid medication, and the difference is amazing. From being totally debilitated just a few weeks ago, I am now much brighter and able to do much more without becoming exhausted. I feel almost normal. I still have a long haul ahead - I am half way through removing my amalgams - and I then have chelation to consider - but taking proper thyroid meds has given me my life back. I am so grateful.
sentinel
GWMB Registered User
Posts: 12
(3/18/06 6:14 am)
Reply Re: Gilberts / hypothyroid theory I have read all the links and done a little bit more research besides and it does seem that you are on to something. Please can I ask some questions.
1. Are we all in agreement the the TSH is not accurate enough for many reasons?
2. T3 and T4 tests can also be misleading.
3. Free T3 and FreeT4 are reliable. Are they absolutely 1 off reliable or would you have to have the test done several times to get an average- plus any other tests to be conclusive.
I have Gilberts. I also have all the symptoms listed for hypothyroid but the TSH that I have had done several times has always come up as O.K. If I persuade my doctor to do the free t3 and free t4 - I am wondering how this will come out and how reliable this is. I'm wondering how to persuade my doctor who I know already has an opinion of me. If I could do this without bothering anyone. It is very depressing to read on one of the links how the lab technician will stop at TSH and not carry on to do the T3and T4 even though the doctor has requested it. I wouldn't want this to happen.
imgeha
GWMB Power User
Posts: 53
(3/19/06 12:00 am)
Reply Gilberts / hypothyroid OK. Sounds like you need to change doctors. Once a doctor has made up his mind that you are neurotic there is nothing further you can achieve with him. Where do you live? I have assumed the UK with the following links:
health.groups.yahoo.com/group/TPA-UK/
www.thyroideducation.com/www.geocities.com/thyroide/docs-UK.htmlwww.thyroiduk.org/The last one in particular will interest you. If you cannot get a doctor to measure Free T3 and T4 levels, you can do it yourself via a 24 hour urine test.
The Free T3 and T4 blood tests are in themselves reliable, but they need sensitive interpretation by an informed doctor. I strongly recommend you read the Tears Behind Closed Doors book - this gives a lot of detail about the problems with blood tests.
To answer your questions:
TSH is felt by the medical profession to be the gold standard of measuring thyroid function. Patients and informed doctors deride it as meaningless, as it only measures the level of thyroid stimulating hormone in the blood, not the actual levels of T3 and T4 at cellular level. It is possible to be hypothyroid and still well within range of the TSH blood test.
This is why Free T3 and T4 levels need to be tested. But it is possible for these results to be in range, and for the patient to be hypothyroid. This is where an intelligent and sensitive clinical evaluation of symptoms by the doctor comes in. No dismissing the patient's symptoms as depression, or neurotic. But actually LISTENING to what she is saying. My Free T3 and T4 levels are in range, but only just. I have debilitating hypothyroid symptoms.
It is possible that the adrenals will also need to be treated, as the body needs cortisol to drive the T3 and T4 into the cells. If the adrenals aren't producing enough cortisol, the body won't be able to use the thyroid hormone. Hypoadrenalism is common with hypothyroidism - the working of the thyroid impacts the adrenals, and vice versa. If one is underperforming, the other will too. Treating just one, ie the thyroid, will cause stress on the adrenals, and can lead to adrenal collapse (I experienced this at Christmas - not pleasant). You may need to treat the adrenals first, then begin thyroid treatment.
personal.atl.bellsouth.ne...uggest.htm
If you look at the Stop the Thyroid Madness website, you will see that they advocate that free levels, particularly T3, should be close to or at the top of the range for the patient to feel good.
I hope this is helpful to you. There are loads of links within those I have given, which should help further.
Nicola
sentinel
GWMB Registered User
Posts: 13
(3/19/06 3:54 am)
Reply Re: Gilberts / hypothyroid theory Thank you Nicola. I am so excited about this. I really think that you are on to something really big here. I should change my doctor again but I have already done this a few times within the same practice and I feel that my card is marked. On the other hand I am so convinced that I want to stay with him to prove him wrong. Thanks for the links - I am at present working my way through them all. I need to get all the facts straight in my head before I dive in. I will certainly let you know - I am just praying that I can take this forward.
imgeha
GWMB Power User
Posts: 54
(3/19/06 7:49 am)
Reply hypothyroid / CFS I am almost as excited as you are. I think this hypothyroid theory could be the reason why patients maintain that Gilberts has symptoms (fatigue, yellow skin, feeling cold, IBS, anxiety etc) and doctors dismiss it. Gilberts people can suffer a great deal, and are blanked by the medical profession. They get labelled with the GS label, and nobody looks for anything else. But it could well be the thyroid, which is also misdiagnosed and mistreated by the medical profession.
I HOPE you get somewhere with this, and that you get on the path to getting well. Please keep me informed! Good luck.
Nicola
piraterocker
GWMB Power User
Posts: 102
(3/19/06 5:25 pm)
Reply attack it hey imgeha.. i was taking iodine for abit and take virgin coconut oil. do alot of stuff for thyroid issues even though stay feeling sluggish at night better in the morning! worn down/brain fog,etc. i had hat reverse t3 to above normal in my recent blood tests. which is rare! so i need to find a doc that is able to figure that out. also real amazing book i have it as e-book i need to figure out how to post it.
The Amazing Liver and Gallbladder Flush
A Powerful Do-It-Yourself Tool To Optimize Your Health And Wellbeing
By Andreas Moritz
speaks about bilirubin stones in the gallbladder/liver. any elevated unconjuncated bilirubin is toxic to the brain.
imgeha.. email me at aaronmichael7gmail.com
Kotulc
GWMB Registered User
Posts: 7
(3/20/06 6:01 am)
Reply Re: attack it Hello! Today i gave my blood for free T3 and free T4 hormons! I payed, because i did't want to disturb my doctor!
FT3 was 6.41 pmol/L (3.95-6.8 is normal)
FT4 was 25.55 pmol/L (12-22 is normal)
Now they will send my blood to make more tests! Is this hypothyroidism??? I must say i have most of this symptoms. I hope, my doctor will give me right stuff to cure this!
sentinel
GWMB Registered User
Posts: 14
(3/27/06 12:49 am)
Reply Re: Gilberts / hypothyroid theory attn Nicola
Please can you tell me where you found information regarding T3 and T4 being processed in the phase2 pathway. I need to find out more.As you suggest- there must be a strong Gilberts connection.My TSH came out at 2 and unfortuneately Ft3 and FT4 were normal. However I still haven't had antibodies,Cortisol or ferratin.How I go about this is another question! My basal temperature is low (97). I looked up the "top thyroid docs" on the site to find that they have either gone,been suspended or given up!. Are you seeing a GP or consultant endocrinologist.Where do I find the top docs who I could get referred to. I am in London but would travel absolutely anywhere.
imgeha
GWMB Power User
Posts: 55
(3/28/06 3:02 am)
Reply Gilberts / hypothyroid OK - this is complicated. Everything I have read says that the bulk of T4 / T3 conversion happens in the liver, though not specifically the phase 2 pathway. BUT -thyroid levels have an impact on the glucoronidation process which takes place in the phase 2 pathway. (This is from the book Amalgam Illness by Dr Andy Cutler - he suggests increasing thyroid levels in order to increase the glucoronidation process) This glucoronidation process is what breaks down the bilirubin in normal people, and is the process where the enzyme is lacking or less efficient in people with Gilberts. So, what I am saying is that low thyroid levels can hamper the glucoronidation process, and increase the build up of bilirubin.
Have a look at this link. This guy has Gilberts, had mercury toxicity, and hypothyroidism (like me, then).
www.geocities.com/ctfutur...llings.htmHe writes:
I understand that T4 (thyroid hormone) is converted to T3 by the enzyme 5'-deiodinase, a process that also takes place in the liver. A sluggish liver will have difficulties with thyroid conversion as well.
So on a standard blood test, you may get 'normal' TSH / T4 results (which as you have probably read by now are next to useless) and elevated bilirubin, get the diagnosis of Gilberts, and 'there's nothing wrong with you, it's a benign condition', when in fact you are hypothyroid.
If your Free T3 and 4 levels are 'normal', you need a clinical appraisal by a knowlegeable doctor. My T3 / T4 levels are within the normal range, yet I have hypothyroid symptoms which are easing on T3 / T4 combined medication. Adrenal fatigue may be an issue for you, though the serum cortisol test is also practically useless. I do think a visit to an informed endocrinologist would be a good first step for you. Dr Durrant-Peatfield is a thyroid expert based in Surrey. His details are at the bottom of this very good article.
www.i-c-m.org.uk/journal/...eb/a02.htmI HOPE this helps further. I feel guilty that I might be sending you on a wild goose chase, but there are reasons for fatigue - chronic fatigue is just a label given by lazy doctors who can't be bothered to investigate further. There's a reason for it, but it's up to you to find out what it is.
Take care, and good luck
Nicola
Kotulc
GWMB Registered User
Posts: 8
(3/28/06 1:19 pm)
Reply Re: Gilberts / hypothyroid Could be HYPERTHYROIDISM also reason for high bilirubin level??? could be HYPERTHYROIDISM also reason for symptoms, which are common by Gilbert's syndrom?
imgeha
GWMB Power User
Posts: 56
(3/29/06 11:31 am)
Reply Gilberts / hypothyroid theory Sorry - I don't really know about hyperthyroidism. I saw your Free results, and thought they looked high. Being hyperthyroid would make you anxious, with a heavy pounding heart, and generally be revved up. This would stress the adrenals and ultimately fatigue them. But whether it would give you the classic Gilberts' symptoms - I don't know. I think hyperthyroidism can make you feel quite unwell. I would think it would be worth seeing a good endocrinologist - general doctors know absolutely nothing about thyroid, hormones, etc.
Nicola
Kotulc
GWMB Registered User
Posts: 9
(3/30/06 6:02 am)
Reply Re: Gilberts / hypothyroid theory I got results for TSH, but they are normal ( 1.89 ). I must again give blood to make the same tests, because they assume, that some mistake in the lab was made. I know, that results will be the same, because of the symptoms. I hope that raised hormons are reason for high bilirubin and symptoms. And hope that is not opposite way, that Gilbert's is reason for higher hormons!
luppo31
GWMB Registered User
Posts: 3
(3/30/06 8:33 am)
Reply Re: Gilberts / hypothyroid theory hi,i had a thyroid test but it came back ok,so is there a certain thyriod test i need to ask for thanks julie:o

sentinel
GWMB Registered User
Posts: 15
(3/31/06 1:20 am)
Reply Re: Gilberts / hypothyroid theory Nicola - please don't even consider wild goosechases. In our position they just don't exist. We have to consider every possible route until we get there. Further to the information that you have posted I have done further research which is very difficult due to the fatigue and brain fog etc. Although my blood is in range I have come to the conclusion after reading your recommended books and sites etc that my problem is not just simply Gilberts but endocrine. I am not saying thyroid but I do have the exact syptoms. Something is going on and I am going to find out what it is. I am probably going to be jumped on by many on this site but the more you read the more you tend to start aggreeing with the doctors in announcing that "There should be no symptoms". As you said some time ago - it is just a sideshow and once you get your head round that fact and start searching elsewhere you will get somewhere. I would like you to read the following link :-
www.cfsresearch.org/cfs/r...nt/15.htm.
It talks about Gluthathione Depletion with respect to Chronic fatigue. I have absoltuely no medical knowledge but I can see plainly the thread of Gilberts/Gluthathione/phase 2 pathway/endocrine/hormone/fatigue/psychological/etc. It has become obvious. I would like to hear your comments on the site in general. CFS research - there is some very interesting stuff- the links are all there and they just need linking to GS.
I am seeing an endocrinologist soon as per your rec. docs list and I will report. I am very positive that we ( really meaning you because you had the foresight to start this) will get somewhere with this.
thanks.
imgeha
GWMB Power User
Posts: 58
(3/31/06 9:26 am)
Reply For Sentinel Atta girl! You're on the way to finding answers. I am so pleased you have an appointment with an endocrinologist. I would bet my bottom dollar that you have thyroid and adrenal problems which are the reason for your fatigue. I think almost everyone with Gilberts has low glutathione, but it is difficult to build back up in the body. Direct supplements don't really get absorbed, but there are whey-based products which are supposed to help. I can't take them because of candida issues. Try googling ImmunePro - there is another one I can't remember now. This is another forum that discusses glutathione a lot in the context of chronic fatigue.
health.groups.yahoo.com/g...erimental/
I shall have a good go over the link you gave.
I saw a top endocrinologist in Brussels this week, and, after extensive blood and urine tests, have come away with a firm diagnosis of hypothyroidism, hypoadrenalism, hypoglycemia, and low hormones just about everywhere you care to look. This is due to the 13 amalgams I have had in my mouth since a teenager, which have poisoned my pituitary system and downregulated all hormone production. I am now on Armour, hydrocortisone, natural oestrogen and progresterone replacement, DHEA, Vitamin A, and I hope to see an improvement in 4-6 weeks, but it will be slow going.
He was the only doctor I have seen in the course of this illness to take me seriously, to tell me to listen to my body, and that I should continue to read and inform myself about endocrine issues. Every other doctor has told me I worry and read too much, and offered me antidepressants. How crap are they? I am hypothyroid for gods sake!!! Just had the misfortune to have figures within the 'normal' range, and lacked an intelligent doctor to do a clinical appraisal. I feel I am finally on the road to improvement, but it will be slow. I have to get stronger to tolerate amalgam removal, and after they're out, I have to chelate the mercury from my body, and then find out what's left of my endocrine system. It's highly likely that I will have to take hormones for the rest of my life.
Anyway, I am delighted that you have had a breakthrough. Even if I can help just one person stuck with debilitating fatigue, and diagnosed with 'just Gilberts', all the hours spent on the internet have been worth it! Feel free to email me on
[email protected] and let me know how you get on.
Take care
Nicola
berbanky
GWMB Power User
Posts: 100
(6/22/06 8:06 am)
Reply Disease causes lower T3 I just came across this study which shows that in many cases of nonthyroid disease, T3 levels are reduced significantly. I guess this could be called "disease-induced hypothyroidism". It makes me wonder if, in cases like this, hypothyroidism could be cured by removing the underlying illness. In this case, it would be Gilbert's, which is genetic and non-removable. But I wonder if lowering bilirubin levels might help, as personally, I'm feeling so much more alive and awake since taking Yin Chen to reduce my bilirubin levels.
So here's the study:
High incidence of decreased serum triiodothyronine concentration in patients with nonthyroidal disease
Serum thyroxine (T4) and triiodothyronine (T3) concentration and binding were measured in 34 clinically euthyroid patients hospitalized for a wide variety of nonthyroidal diseases. Despite clinical euthyroidism, serum T3 was in the hypothyroid range (less than 90 ng/100 ml) in 24 of the 34 patients, and the mean serum T3 of this group, 78.4 +/- 38.3 (SD), was significantly decreased from that of control, 134.0 +/- 29.3 ng/200 ml. Mean serum T4 levels were essentially the same in both groups, 7.3 +/- 2.0 for sick patients and 7.2 +/- 1.0 mug/100 ml for the controls. Plasma binding of both T4 and T3 was decreased in the patient group to 69.9 and 78% of control values, respectively. In accord with previous studies, the mean free T4 index, proportional to free T4 concentration, was significantly increased to 10.0 +/- 4.1 in the patient group (control, 7.6 +/- 1.3). However, the mean free T3 index of the patient group, 92.9 +/- 38.4 remained decreased from that of control, 138.9 +/- 34.4. Of the 24 patients with decreased serum T3 (less than 90 ng/100 ml), low T3 levels could be attributed to decreased plasma binding in 8; in 5, serum T3 was within the normal range for their advanced age. Mean TSH was greater in the patient group 2.6 +/- 1.9, than in the controls, 1.9 +/- 1.1 muU/ml. Moreover, the TSH response to administered TRH was moderately exaggerated in 7 patients with low free T3 index compared to 7 patients with normal free T3 index. Although significant statistically, neither the basal nor TRH induced TSH levels were in the range generally found in primary hypothyroidism. The data suggest that the high incidence of low serum T3 (70%) and free T3 index (32%) in nonthyroidal disease may be related to the catabolic state that accompanies illness rather than to specific disease entities. At the present time, the use of serum T3 or free T3 measurements for the diagnosis of hypothyroidism does not appear justified in patients with nonthyroidal disease.
In Short: Patients with a wide variety of nonthyroid diseases showed much lower T3 levels (70% were in the hypothyroid range) while T4 levels remained normal. Plasma binding of T4 was 70% that of normal and T3 was 78% of normal. These findings may be due to the catabolic state that accompanies illness.
ealfano
GWMB Registered User
Posts: 1
(6/27/06 1:02 pm)
Reply Re: Gilberts / hypothyroid theory I was diagnosed with Gilbert's syndrome hypothyroidism in the 1980s and am taking Synthroid. I have symptoms many of you write about--extreme fatigue, brain fogginess, difficulty concentrating, and long-standing memory problems. More recently, I found out I have a vitamin D deficiency, despite walking in daylight at least 40 minutes every day and despite supplementation in vitamins. I think it is likely that the vitamin D deficiency is due to a genetic condition (and there are some that interfere with vitamin D absorption). I also found out that I have MTHFR C677T polymorphism. As I understand it, homocysteine in converted into methionine which is needed for DNA metabolism. MTHFR is part of what helps the conversion from Homocysteine to Methionine and B vitamins are essential to the conversion. If you have 2 copies of this genetic mutation, you are at high risk for clotting disorders and heart attacks and strokes. I only have one copy of the gene and it is unclear whether this has some health consequence, although b vitamin supplementation has been recommended. My point in explaining all this is that it I suspect that there are a number of conditions that seem to co-occur and reading this forum was the first I realized that there is a good likelihood that Gilbert's and hypothyroidism co-occur at a higher rate than you would suspect and that they may be related.
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