Re: Introducing myself - Fiona

[Guest guest]

Hi, Fiona, welcome!

When you have some time, perhaps you can teach us a bit about Di syndrome... it's something that I'd never heard of before.

I'm afraid that I'm not familiar with IVF either..

Since you seem to be dealing with a birth defect of some type, if I'm understanding this correctly.... so I'm not sure if an antibody test would be valid for you.. but if your doc is willing to run it I'd go for it any way... as for the other tests...

TSH is the thyroid stimulating hormone.. the hormone that was mentioned in that article this morning. It's released by the pituitary gland and is used to control the function of the thyroid gland. The actual thyroid hormones are T4 (the storage hormone) and T3 the active hormone. It would still be valid to see the level of these hormones available for use, Free T4 and Free T3... I'm not sure if totals (total T4 and Total T3, the total of Free and Reverse) or reverse (reverse T4 and reverse T3)Would be of much value.

If your thyroid and parathyroids are not developed properly I would think that it's very likely that they are not producing as they should. It is possible that some of your other symptoms are a result of chronic low grade hypothyroidism.

Many docs are not very well versed in thyroid care. They have been taught that simply keeping a patient within 'normal' range on the tests is sufficient. Unfortunately for many people just being within those ranges does not mean that they are getting enough hormone to be healthy and feel well.

As you can see the lab ranges have been changed... if you look at the information from the latest research, the research that was used to determine the lab ranges (you can see the chart and test protocol here: 'Normal' TSH ) you'll see that they discovered that most of 'normal' folks have a TSH of about 1.25. We've found that most folks on replacement hormone find that they feel best with a TSH of around 1.0...

As for the Frees.. I've still not found any research showing the ideal level.. just the ranges.. from what we've seen, however, having Free T4 at about mid range, or slightly higher, and a Free T3 at the upper end of the range, or slightly higher seems to be where most folks feel the best.

But... if you go back in time to the era that was before synthetic hormones and the labs that came into being because of them. Folks were treated according to their symptoms. Thyroid levels being outside their ideal range for an individual greatly affects their metabolic rate. So along with symptoms displayed by the patient the doctor also monitored their metabolism by tracking basal temperature (taken when first waking in the morning, before moving), respiration, taken at rest, and last, pulse rate, taken at rest.

With these three markers they were able to determine if the hormone levels were adequate for the individual and if adjustments were needed.

Today that method is still very accurate and valid. But isn't "scientific" enough for some. I can state from first hand experience that I've felt better since I started self medicating by symptoms and basals with natural thyroid than I did for all the years I was being treated and dose with synthetics by doctors.

I guess what I'm trying to say, in my typically wordy way, is that lab values and ranges are a guideline and that the bottom line is once within range it's up to the doc and/or the patient to work together using the same tools that have been used for more than a century (observation of the patient) to fine tune the dosage within those ranges.

You can access our web site to review the hormones, meds, and tests and to learn more about self-monitoring, if you'd like:

www.thyrophoenix.com/thyroid_101.htm

www.thyrophoenix.com/self_monitor.htm

You and I have something a bit in common, btw... I'm here because of RAI... I was in thyroid storm after 20 some odd years of being hyper due to a genetic defect... I've got bad TSH receptors... Not fare to be ill because your body didn't come out right... but, well... for some of us we're lucky enough to figure out how to work around that.

I would like to suggest that you may want to consider discussing natural thyroid with your doc, verses synthetic. With both your thyroid and parathyroids not working properly you are not getting adequate Calcitonin... one of the things that are available in natural thyroid... Calcitonin is used by the body to pull calcium out of the blood and back into the bones. Reducing risk of osteoporosis and generally better bone health.

There are various supplements that can help to urge a thyroid toward better production and increase conversion rates.. but I'd suggest that you wait on that until you have tests to see what your function is now... then go from there...

So... ready to start your journey into figure out just how much this is affecting you and how much better you could be with proper supplementation?

Oh.. I got this in another group that I'm a member of that may be of help to you since you are from the UK... I've not gone through it yet.. but thought that I'd pass it along to you

http://www.armourinfo.freeuk.com

the explanation that accompanied the link was: "I have made up an Information Pack for Patients and Doctors in the hope that this will help UK patients to get Armour prescribed on the NHS. This is made up of letters and documents. I do hope that this will be of some help." Sheila is the name of the gal that pulled this together.

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On Sat, 23 Oct 2004 16:23:48 -0000 "fionawool" writes:

Just like to introduce myself. My name is Fiona, I normally reside on other support groups as I have Di syndrome and have recently been diagnosed with autoimmune problems possibly lupus - my ANA test was weak positive.I also have candidasis - hypoparathryoidism and have a family history of hypothyroidism. and also psorarsis.To cut a long story short - amongst the new bundle of tests I have asked for is a thryoid profile. I have low calcium, low white cell count, low platelets, abnormal T-Cell count.After reading your recent article about AACE, I am going to take it along to my immunologist next week - I am convinced I have hypothryoidism and have all the symptoms and have had for months. What I say to you is thank you.Does anybody know whether recent IVF i.e. within the last year also affects thryoid function - bearing in mind that I was on the maximum dose and it was less than a year ago? At the time, I was told that my thryoid levels were normal. However, I have big question marks about that because Di syndrome is the failure of the third and fourth pharyngeal pouch syndrome to develop properly i.e. the thryoid and parathyroid. I was diagnosed with a 22q11.2 deletion back in 1994 and have never had any tests until now - a heart murmur was found. I have a cardiologist appointment in November.I have not had Free T3 and Free T4 tests done or PTH. Are there any others I should ask for??? However, in saying that I do feel much better than a few months ago but as I say convinced that I have hypothryoidism. Also are there any natural foods, vitamins, minerals which can boost thryoid function?Fiona