Right, after settling on Levothyroxine last year, I got diagnosed with Lyme Disease too on top of all my other issues and was advised to cut out dairy as well as the gluten now. When I realised there was lactose in the Levo, my G.P. Kindly agreed to me swapping to Armour Thyroid instead. I was pleased, knowing that I'd be getting some T3 too now but just had first blood tests back since the swap and my T4 is 13.8 (12 - 22) and my TSH is 0.12 (0.27 - 4.21). The doctor has not requested to see me after these bloods being done and my endo discharged me from his care last year, even though I had three biopsies on the thyroid, the last two showing a cell change. The cancer specialist said normally he'd operate but won't at the mo' with all my other health issues.
I'd be interested in anyone's thoughts on these blood test results. Do these mean I need to up the Armour or lower it?
Thanks for reading.
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chocoholic17
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TSH and FT4 are generally lower on NDT than Levothyroxine. It's not possible to advise whether you are optimally medicated without seeing what FT3 level is.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
What doctors do not realise is that Whole Thyroid often suppresses TSH. Actually, your FT4 should be in the top half of the range and FT3 in the top 25th percentile. Your doctor should test for FT3 because that is the active hormone. My TSH last time it was tested was 0.08 but my doctor went by the thyroid hormones (TSH is a pituitory hormone). my doctor was fine with my low TSH because my FT3 was in the upper part of the range and I had no symptoms.
I live in New Zealand and here GPs refer you to a local laboratory. In Dunedin where I live 'our local Lab 'Southern Laboratories' is based in the city's only public Hospital and has agencies scattered around the city. It is not possible to self refer for all tests, but self referring for TSH, FT4 and FT3 are allowed for a small cost. Since the GPs use this same service, they must take notice of the results. Don't you have a system in the UK that allows patients to self-refer for simple tests like these?
Wow!! How simple that would be mongolia1! Just to be able to have a check run, when the PATIENT - having been fine - then goes on to feel really unwell. This system would save so much time and money and, as you say, it is the same lab that doctors use. But this would also save a lot of concern for so many individuals: (makes little difference to me... my issue was never the numbers but my receptors/cells: I take T3 and am over range for FT3 but still with symptoms... my vits/mins are fine).
Thank you for this - excellent to hear! Yes, as you say, these are simple tests, which so many patients have been and still are being (barbarically) denied in a country that used to pride itself on being 'the best in the world', yet has become so terribly shoddy for some types of patients. My best wishes to you
These tests are not only simple, but cheap as well. It is beyond reasonable comprehension why doctors would refuse such tests when their patients ask for them, especially if the patients tell the doctor that they will carry the financial cost for the test to be done. I do not know what the system is in the UK, but here, the ministry of health gives a grant to general practices to cover these costs. I suspect that some practices skimp on tests as a saving measure. Any money not used is extra profit for the practice. This may go some way to explain why GPs generally rely just on the TSH as a diagnostic tool. I self referred for my first FT3 and FT4 tests.
I know, how much better that people 'take some charge' of their own health by being able to do these simple things - from which they would further learn by reading their own data and considering/documenting how they feel via what the #'s say = everyone 'wins'? Ah, but 'they' do not want that.
The 'power structure' in the UK is not about health, it is about arrogance and control [automatically, in my book, spells ignorance]. I am deeply ashamed for the 21st Century medical care of hypothyroidism [and several other issues, such as adrenal insufficiency and even what they do to Type 2 diabetics].
Great to hear about NZ - thanks - there is hope somewhere xx
I do not think it is all that much better here in 'Godzone'. We have more than our fair share of doctors who are arrogant condescending pricks! I have taken charge of my own health. If I had not done that, I would still be seriously deficient in B12, would not have optimally treated Hashimotos and sleep problems due to unrecognised Adrenal Fatigue.
I have had many GPs and many Private tests, but no GP of mine has ever accepted a test result, that I have had done privately. In fact last year, one GP asked me to find another doctor as he considered private testing to be done by quacks and a criticism of the NHS!!!
Other countries are far more 'advanced' than the UK. Well done to N.Z. GPs
As far as I know, we have only two private organisations in NZ where you can go to for tests. These places tend to specialise in the more controversial tests such as saliva tests, which are not done by the publicly funded laboratories and sadly not always recognised by the medical establishment.
However, as I explained, the publicly funded laboratories will do some of the usual simple tests for a fee if a patient self-refers. So I was able to get my TSH, FT3 and FT4 tested but was unable to get my anti-bodies tested because that was not included on the list of permitted self referral tests. I went to my doctor and demanded that one!
Last time I was tested, mine (FT4) was in the top half at 15.0 ( range 10.0-24.0 Southern Laboratories NZ). I guess it depends on a number of factors including the reference range being used. The BMA has a patient booklet on the thyroid edited by Anthony Toft (Family Doctor Guide to Thyroid Disorders) in which the recommended range for FT3 is 3.0-8.0. The BMA FT4 range is 10.0-25.0 If a patient went as high as FT3 8.0 in NZ, most doctors would really get their knickers in a twist as our FT3 upper limit is 6.0 ( 2.5- 6.0 in the majority of NZ laboratories! My last test (FT3) was 5.5 which is at the far upper end of our range. I am on NDT.
Ranges for FT4 and FT3 depend on the machine used to test it, not the area where it's done. Ranges vary across the UK, too. But you have to look at the result in the context of the range used by the laboratory. So, if the range goes up to 8, then 8 isn't too high.
Doctor Toft was talking about people on T4 only, not people on T4 plus T3. The ranges were designed for people on T4 only, which means you have to use a bit of discretion and leeway when testing people on any form of T3.
You could try asking again and say why but from what you say it doesn't sound likely. The other option is privately. Blue Hotizon do tests as do Genova Disgnodtics but there is still no guarantee the medics will take notice of them! The tests are fine but they seen to draw a veil over anything they haven't done but it will help you to know what is happening. You can then post your results and I'm sure others will be able to help you understand what they mean if you are t sure.
Yes, silverfox7 - they tie our hands at every step by not doing what magnolia1 above depicts as an amazingly simply system (where many patients could learn to take a more individualized responsibility for their OWN health) and then scoffing at perfectly good private labs. Were it not for thyroid forums [which many also scoff at], where would people be!?
I am undergoing treatment, with bio resonance and homeopathic remedies for the Lyme and she feels confident that my bloods will show huge improvements, once she kick starts my immune system which showed up as being severely suppressed in the Lyme test I had done through a lab in Germany. I'm actually feeling a little better mentally than I did since the switch to Armour, so maybe I'll wait until next bloods and if there is no change, try requesting the T3 check then.
I was just a bit ignorant about the natural thyroid suppressing the TSH.
Hello, It may well be that your thyroid issues were caused in the first place by Lyme Disease and maybe other pathogens which can affect every cell in your body. Have you been tested to check whether you have any of these other causative factors - e.g. Mycotoxins, Chronic viruses, which often accompany Lyme Disease? For years we mistakenly chased down the thyroid route seeking help for my daughter, all to no avail. Has your methylation been checked, or nagalase levels? We finally found a doctor in the USA who gave her a full range of tests and discovered that her thyroid problems were merely a symptom MUCH bigger problems including Lyme disease with coinfections, mycotoxins and chronic HHV6 for which she is now being treated. I'll be happy to send you information about the advances they are making in the USA regarding these issues if you want it, and the doctors who are successfully treating their patients. Jane x
The bio resonance machine tests masses of things. What showed up as co-infections were chlamydia pneumoniae (no, that's not a STD by the way) and strep. EBV, floored me two years ago, too. It's sometimes hard to tell what causes which symptoms. Biggest issue still pain legs all the time (yes, tried b12 shots and numerous drugs but nothing is helping) and the reflex syncope making it impossible for me to stand still for more than ten minutes at a time.
It's early days with my Lyme treatment, so I'm really praying this may start me on the road to recovery.
Hi chocoholic, I wish you well on this difficult journey. I learned from another site many years ago that people who had been vaccinated would suddenly come down with EBV. I'm in the U.S. and don't know what the incidence might be in the UK. Did you happen to receive any shots before you became ill?
EBV (a gut virus) causes cancer and chronic fatigue syndrome to name a few awful conditions. The level of antibodies determine how significant the side effects and risk are.
I had the test recently and was surprised I had had glandular fever but astounded at the massive levels of antibodies in my system. My sister, a cancer research scientist and my private GP have done extensive research on this subject and once on the new meds I feel stronger and am safe in the knowledge cancer is a less ominous threat. ( yes I have had cancer sadly before the test)
That's interesting Howard. I have had several biopsies on thyroid nodules and the cancer consultant said the cells had changed last time bug I was not aware of any connection between EBV and cancer. Do you mind if I ask what meds you have had to help you deal with this?
Sure valacyclavir- not a cheap drug but effective at reducing the antibodies. Feel stronger too and you are rarely on it long term-only until the antibodies reduce to a safer level.
Thanks for the info. Howard. I was led to believe there was nothing could be done to help treat EBV. I had a week in hospital, very poorly, before they finally diagnosed me with a positive blood test for EBV. I was discharged with no meds to help and no info about the virus either. I asked if they had a leaflet with info, as I was totally ignorant about EBV. Can you believe I was told they could give me no info. Their advice.......go home and Google it!! Brilliant. EBV floored me for two months. Just crawling into the loo was such an effort and I've never felt fully better, if I'm honest.
More hopeful now, as I'm getting naturopathic help and homeopathy. Already feeling a little better, so fingers crossed.
Hi. Am glad you are getting a little better. My only concern is that you need to find out the levels of your antibodies from the EBV as these can cause cancer if they are high.
So a person can recover fully but be unaware of what is potentially a problem around the corner.
I have had these conditions, then cancer and was told this week sorry you had radiotherapy for no reason it was the EBV.
Gosh, that's shocking. Bloods through my G.P. showed EBV n longer active but bioresonance picked up its at the forefront again. Don't think my G.P. will check for antibodies as bloods weird okay with him. On the Lyme test I had the only antibodies positive were IgG.
Thanks, Jane. I already belong to the Facebook forum you mention and John Caudwell is brilliant. He is trying so hard to raise awareness of Lyme Disease in this country and the man is greatly admired by many, including myself.
I have similar results on NDT low tsh and t4, that is normal, for these meds but the T3 should be in the top of the range. I have also read on a green med posting that stevia leaf is more effective than anti biotics at treating limes, might be worth looking up.
I've been reading that recently too, mandyjane but I'm not going the antibiotic route. I'm having homeopathic remedies along with bio resonance testing.
TSH=0.12 isn't dangerously low. But what about FT3? It's difficult to know what is going on unless you're getting the minimum 6 tests: TSH FT3 FT4 rT3 TPOAb TGAb. T3 is what really lowers TSH; the fact your T4 isn't all that high indicates the T3:T4 ratio of 1:4 in Armour may be too low, maybe you need a ratio in the range 1:5-1:10. Assuming that is the issue, a patient in this situation might be better off with lowering the Armour a little, and taking some supplemental T4.
Thanks, Eddie. Not sure my doctor will help me adjust this. It's so hard just to get an appointment. I just wish I had a KNOWLEDGEABLE endocrinologist to help me out.
Will see how the Lyme treatment helps and just maybe if that improves things, it may have a knock on affect on my thyroid too.
There is a way the patient can adjust their own dose. Some combination of the following can help you do it: (1) The T3 "power factor" of 3-4, which tells you that each microgram of T3 is 3-4 times more powerful than a microgram of T4; (2) The T4-only full-replacement dose of 1.7mcg/kg body weight; (3) The T3:T4 ratio, which is 1:4 in NDT, but can be adjusted upward (mine is 1:5) so that your FT3 and FT4 are both at appropriate places in their ranges, at which you feel well.
Ridha Arem discussed the T3 power factor many years ago in his book Thyroid Solution. I don't know why endos won't tell their patients about dosage adjustment, I guess they don't want to give away their authority (or show their ignorance).
Chocoholic17, When you are taking NDT, the TSH and fT4 are not very meaningful tests, as these are both really intended for those on Levothyroxine only. The blood test that will tell you most accurately how you're doing is fT3, which should be in the top third of range.
I'm in the same boat as you, taking NDT, but often relying on NHS testing which doesn't always include fT3. So I pay to get the extra test done through BlueHorizon or a private doctor. It is under £100 (I want to say £70 but not sure off the top of my head - you can easily find out on the ThyroidUK website).
This is the only blood test that will give you the info. Although as others say, how you feel is more important than any numbers.
I don't understand why physicians don't know what happens inside your cells. T4 has to convert into the active T3, which mostly happens in the gut and in the liver. Free T3 is the active hormone giving fuel to all your cells in the body.
There is a lack in the medical education for GP/MDs, and most sadly even for endocrinologist who should have learned to understand everything about the endicrine system and what's going on inside our bodies.
I recommend you get a better phycian who really can help you.
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I haven't seen mine, but have read enough on here.
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