Hi All, My 21 year old daughter has a diagnosis of Chronic Fatigue Syndrome and Fybromyalgia. She also has an under-active thyroid for which she takes 50mg Levothyroxine. After reading about the possible link between out of range Reverse T3 and symptoms of CFS, she had some private blood tests done (GP would not do full thyroid function as her TSH and T4 were with in range).
These are the results:
TSH 1.10 (normal range 0.27-4.20)
T4 Total 127.0 (64.5-142.0)
Free T4 22.45 (12-22) JUST ABOVE NORMAL RANGE
Free T3 3.88 (3.1-6.8)
Reverse T3 45.0 (10-24) VERY HIGH
Reverse T3 Ratio 5.61 (below 12 is LOW)
The GP has told my daughter that Reverse T3 is considered a red herring and not worth investigating further.
We don't understand this all enough to voice a case to the GP, or a non believing Endocrinologist.
So, firstly, please can somebody help us to understand these results and, secondly, has anybody seen an NHS Endocrinologist with results like this and had a positive experience - or can anybody recommend a private Endo in the Essex / Suffolk / London area who will help us?
Thank you in anticipation.
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sarahaallen
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I would be very surprised if you could find any NHS doctor to accept anything about rT3 and I think you'd have to be very careful in choosing a private endo because one that also works for the NHS or is mainstream probably wont recognise it either. I think it would be virtually impossible to find anyone that will treat with T3 only to reduce the rT3.
You/your daughter may have to decide if this is a route you are willing to pursue on your own.
One thing you could discuss with your GP/endo is that her over range FT4 and just within the bottom of the range FT3 would suggest poor conversion of T4 to T3 and that adding T3 to a reduced amount of Levo would help. Good conversion takes place when the FT4:FT3 ratio is 4:1 or less, according to member Diogenes who is an advisor to Thyroid UK. Your daughter's ratio is 5.78 : 1 . An endo is more likely to be understanding of that and any prescription for T3 must be instigated by the endo initially and then the GP surgery would be responsible for prescribing and paying for it. It's extremely difficult to get T3 prescribed now, many CCGs are refusing because of it's extortionate cost which is something in the region of £250 for 28 tablets I believe. Self sourcing T3 brings the cost down to a very much more acceptable level, and holidaying in Greece or the Greek islands will bring it down to less then £2 for the same amount.
If we don't have a decent dose we can feel much worse. These are a couple of links from an archived site as the doctor died due to an accidental death. He was an expert on Fibromyalgia which is due to thyroid hormone resistance and his patients only recovered with T3 only. I am not in the least medically qualified but due to your daughter's high T4 and low T3 it would seem to me she isn't converting to sufficient T3 plus high RT3:-
In the UK it would appear we don't have knowledgeable doctors and the BTA will rarely prescribe T3. In fact T4 is inactive and it's job is to convert to T3 and it is T3 only which is required in all our receptor cells = the brain contains the most plus our body needs T3 to function.
Dr Lowe was also an Adviser to Thyroiduk.org.
P.S. I take T3 only as I was quite unwell with levothyroxine.
I would also say that she probably doesn't need to be on T4 alone.
RT3 binds to the receptor sites not allowing the active T3 to get to the cells. T3 is what we need.
A normal body converts T4 to T3 which is why Drs give T4 alone thinking that this is ok.
A LOT of us don't convert T4 to T3 which is where the problem arises.
Your daughter sounds like she is not converting so just having T4 (Levo) will make the problem worse.
Have you looked in to T3 or NDT (natural Dessicated thyroid) most of us buy from abroad. I feel sooo much better now on NDT.
The functional medicine Drs will have a lot more idea about all of this
The other thing I was thinking was after my daughter had glandular fever and suffered chronic fatigue, I took her for acupuncture which really helped a lot.
Yes glandular fever can cause Cfs and cancer. It can be treated ( if you can get it ) with antiviral meds valacyclavir. It is v helpful but expensive and given only by private consultants.
I think in most countries they may do so as they have to, I believe, pay for their own medications whatever they are as there's no NHS. I don't think there's any restrictions.
It was just a suggestion as asked for and yes obviously worthwhile enquiring (prior to booking & paying) whether that medic or that nutritionist has had success in reversing or resolving your specific illnesses.
So it does look as if you need an increase. Some people take up to 6 grains or more. It all depends, so what dose suits one doesn't always suit another. I suppose it's because hormones we're dealing with. I hope you have success with some T3.
Was your heart going like the clappers etc?. Did you feel extremely hot? Did you take both pulse and temp? Did you feel very uncomfortable?
I think you would have higher FT3 as the NDT contains T3 and levo doesn't. Blood tests were introduced along with levo. As you know I'm not medically qualified but Dr L had this to say.
"In response to this same TSH level, the thyroid glands of other patients will release too little thyroid hormone to keep metabolism normal. These patients will remain ill with symptoms of slow metabolism—despite the same TSH level that keeps other patients well.
The same applies to T3 blood levels: Patients fall into a bell curve—some enjoying normal metabolism with a particular T3 level, others suffering from symptoms of slow metabolism with the same T3 level.
What’s most important to realize is this: The variation in how different patients respond to the same TSH or T3 level makes the reference ranges (formerly called the "ranges of normal") for the T3, TSH, or any other hormone totally without value in finding the dose of thyroid hormone that’s safe and effective for individual patients.[1,p.1217]'
In my experience, most conventional endocrinologists, seemingly unaware of the bell-curve phenomenon, make a trouble-causing presumption: that researchers have scientifically established the safe and effective dose of thyroid hormone for all human beings. That dose, they presume, is one that keeps the TSH and thyroid hormone levels within their reference ranges. This, however, is a false and scientifically unjustified presumption."
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