Private blood tests - by post!

anonymus1268

Hi, I have not found anything in the forums related to this. I have hashimoto's condition, which is an autoimmune disease related to the thyroid. I have not been able to find a gp who could make all the blood tests I want to check.
For your info, I dropped the levothiroxine and I am taking now natural dessicated tyroid. I try to manage and control my lab numbers, as gps and endocrinologists are usually useless to keep an integrative approach to hashimoto. I need to check my reverse t3 ratio, as I am suspecting that is where my numbers are not right. For several years, I have asked for that blood test to be included in the monintoring of the thyroid, but have never been able to have it included. Not sure why. So, I have been looking online, and there are several labs around the world where they send you a kit for the blood test you request, and you need to go to a gp to have the blood taken, and then you send it to them by post in a specific envelope they supply. But then here in Ireland, as usual, things are not so advanced. There is one in Skerries that do something similar (bloodworks dot ie), but they do not include the reverse t3 I am looking for. I have found several in the UK, like medichecks dot com or medi-labs dot com. It is not cheap but I could manage it once a year.
Anyone have tried any of these two? Any other option you may have for the reverse t3?
I am taking the opportunity and if I order this lab I will include one to test the leptin resistance, to which my gp thought I was crazy when I mentioned it.
I have not ordered them yet, I will wait and see your answers here. Thanks

Pannie327

I've done tests through the post before, and was looking for that option when I saw your post.

You've explained why I can't get reverse t3 -- they just aren't doing the test. Frustrating!!! Typical too. Why won't the doctors just say there's no lab that does it. I'm tired of doctors speaking in riddles, or trying to pass off inadequate information with confidence. We do need that tested and treated if we have it! It could make a huge difference. Our health system is lacking in far too many areas!! Shameful.

I'm going to try your suggested links. Other option is to go abroad. I do get much of my care abroad already, with a rare disease not treated adequately in Ireland. You might know already... get your gp to refer you to an endocrinologist anywhere you want (London?), and go through the cross border care scheme to get the HSE or your insurance to pay.

Thanks for the links! Good luck to you!

Arbie

Who is advising rT3 testing? And what is the indication?

I can't find anything significant on PubMed, UpToDate, etc.

Pannie327

Hi Arbie,

I can only speak for myself here... I can prove rT3 testing is supported by peer-reviewed reputable research, and I certainly do have good reason/indications to warrant this non-invasive blood test for myself.

Research: (apologies for formatting-- as a new user I cannot paste direct links)

ncbi (dot) nlm (dot) nih (dot) gov/pmc/articles/PMC3857600/
ncbi (dot) nlm (dot) nih (dot) gov/m/pubmed/4055428/
emedicine (dot) medscape (dot) com/article/120937-overview#a1
drugs (dot) com/pro/triostat (dot) html
stopthethyroidmadness (dot) com/recommended-labwork/
Also supported by The Institute of Functional Medicine (Total T3/RT3 ratio and more)

Indications:
- Crushing fatigue
- Heavy metal toxicity 12 years
- Chronic and *severe* inflammation not otherwise explained -- yet
- Chronic illness, major weight fluctuations (>80 pounds gains and losses), anaemia, adrenal issues, progesterone sensitivity, gynaecological illnesses/surgeries, extreme prolonged stress, chronic pain
- Depression/anxiety naturally come with all of this
- Numerous other major surgeries
- Mast cell disease
- MTHFR mutation
- Specific Antibody Deficiencies
I could go on... but maybe that's enough for your curiosity?

There are inadequacies in the system. If we can work with a doctor, provide the evidence they can't / or haven't accessed, then we might find ways to improve our health.

I hope I've provided you with some useful information.

Arbie

Pannie327 wrote: »

I can prove rT3 testing is supported by peer-reviewed reputable research

Unfortunately none of the links you listed are proof of anything - most of them barely mention rT3.

Pannie327 wrote: »

ncbi.nlm.nih.gov/pmc/articles/PMC3857600/

This article is from a low-impact journal and mentions rT3 just twice, and only in passing. There is no mention of its role in any disease and no mention of the relevance rT3 serum levels. Not only that, but of the 2 fleeting mentions, only 1 is referenced, and when I looked at the original paper it's not even mentioned in it.

Pannie327 wrote: »

ncbi.nlm.nih.gov/m/pubmed/4055428/

This is a paper from 1985, again from a low impact journal. The full article is not available. Regardless, the abstract barely mentions rT3 and where it does, it says that it's not a useful test.

Pannie327 wrote: »

emedicine.medscape.com/article/120937-overview#a

A reasonable source to look at, but again it mentions rT3 once, in passing, and there is no reference.

Pannie327 wrote: »

drugs.com/pro/triostat.html

An ok source, but the page mentions rT3 once, in passing, and there is no reference.

Pannie327 wrote: »

stopthethyroidmadness.com/recommended-labwork/

Have you looked through that website? It is not peer-reviewed. In fast, it's a hodgepodge of quackery, rants, and anger at doctors. But no evidence.

Pannie327 wrote: »

Also supported by The Institute of Functional Medicine (Total T3/RT3 ratio and more)

Functional medicine is quackery. It is not evidence based.

Pannie327 wrote: »

Indications:
- Crushing fatigue
- Heavy metal toxicity 12 years
- Chronic and *severe* inflammation not otherwise explained -- yet
- Chronic illness, major weight fluctuations (>80 pounds gains and losses), anaemia, adrenal issues, progesterone sensitivity, gynaecological illnesses/surgeries, extreme prolonged stress, chronic pain
- Depression/anxiety naturally come with all of this
- Numerous other major surgeries
- Mast cell disease
- MTHFR mutation
- Specific Antibody Deficiencies
I could go on... but maybe that's enough for your curiosity?

You've listed off indications there but no source for the list. Is that from a paper, a textbook?

I suspect the reason it's not available here is not because the Irish system is bad/cheap/ignorant, but rather because it's just not a useful test. Can you point out a few reputable sources (e.g. a peer-reviewed paper from a high-impact journal, an interview with an endocrinologist at a well-respected hospital, an endocrinology textbook, etc.) where we can find details of how rT3 is actually used in medical care?

Pannie327 wrote: »

There are inadequacies in the system. If we can work with a doctor, provide the evidence they can't / or haven't accessed, then we might find ways to improve our health.

I hope I've provided you with some useful information.

Any doctor I know is happy to listen to what patients have read about and discuss it. Unfortunately much of what people find in their research is not evidence based and they may be disappointed/offended when this is explained to them.

Pannie327 wrote: »

and I certainly do have good reason/indications to warrant this non-invasive blood test for myself.

Blood tests are invasive by definition.

Wesser

I can totally understand your feelings on this blood test .
However I do not think it is reasonable to expect Doctors to buy into blood tests that arent part of mainstream modern medicine that is supported by guidelines and evidence.
Just because the doctors aren't doing what you want , doesnt make them bad doctors.
The doctors are always going to stick to best practice guidelines, and so they should.

Pannie327

Thank you for your input Wesser. You two are correct-- a doctor can certainly disagree, that isn't "bad".

What is "bad" and possibly negligent is invalidating a person who has "reasonable plausibility", and has definitive diagnoses/results that indicate a problem that's greatly affecting their quality of life. It's not expensive and ok, minimally invasive.


To address Arbie's points, I think a step back is needed, instead of hammering on arbitrary points.

Most importantly... I'm not by any means suggesting rT3 is required for just anyone. It does seem to be necessary to adequately investigate my picture and anyone with diagnosed Hashimoto's.

Admittedly, I'm not an expert in cellular physiology, anatomy, biochemistry... not my favourite topics. I've not studied that stuff for 30 years until I was getting more ill, and not getting the help I needed. Fortunately I've found a lot of useful info as more and more becomes available online. The literature I typically read is all "evidenced-based". Some patient blogs include impressive bibliographies, which I do check out when so intrigued.

Yes, I've discussed my overlapping conditions with SUPERB doctors -- ones who will listen to the bigger picture. (Not every doctor will listen. You're lucky since every doctor you know listens to you.)

My list of indications is certainly not copied from a book!! Those are some of my diagnosed conditions -- validated by world specialists.

Yes, it was their suggestion that I get a thorough review from a haematologist and an endocrinologist (specifically ordered in writing by my Mast Cell specialist from Oxford -- he works from The Manor Hospital, "one of the most modern and technologically advanced private hospitals in the UK", and he holds clinics in London twice a month.)

Getting a haematologist proved difficult!!! The he had little to offer, but also agreed an endocrinologist should be consulted. That wasn't easy either. Getting cooperation is like pulling teeth. (What are these doctors protecting? It's not my well being!)

The local endocrinologist was not at all cooperative. I was lectured with authoritarian prowess, which didn't impress me one bit. I'm still 3 years now trying to get answers and treatment for this horrendous inflammation, weight, fatigue and malaise -- common to many conditions, but nothing has helped me. (Extreme post op swelling ... I think I've mentioned that already?)

Yes! I do have some bright advisors! I've 14 specialists in London (Queens College, Wellington Platinum and South, Harley Street/Devonshire Street clinics, Princess Grace, St John's and Elizabeth's, and Parkside). I also have 3 specialists in the DC/Baltimore area (former head of neurology for Johns Hopkins, neurosurgeon at Doctors Community Hospital, gastroenterologist at Georgetown University). 4 out of those 14 are considered among the top doctors in all western medicine for their field.

I tried my best to find out more on everything so I'm asking good questions, focusing for each person. I'm researching a lot of topics. Regarding thyroid, specifically about Hashimoto's, I found lots of labs discussing their packages, the docs I referenced in a earlier post and a few more bookmarked. I'm not sure I have this yet... just trying to rule it out or get confirmation so I can refocus my diet/treatments.

I'm not copying every quote I've highlighted; however, I will point out something you may have missed in the first document from NCBI -- as they reference rT3 relating to many of my conditions: cardiac, CNS, kidneys, colon, skeletal muscle, liver... maybe this is the key to explaining what others haven't been able to for me?

"....hepatic type 1 DIO mediates peripheral T4 to T3 conversion; DIO2 converts T4 to T3 in the hypothalamus and pituitary, thereby playing a central role in negative feedback regulation of the HPT axis; in contrast DIO3 converts T4 to reverse T3 (rT3) and T3 to T2, thereby limiting TH action [4] (Fig. 1). T3 is the principal bioactive hormone and although non-genomic effects of TH are recognised [5], its major actions are mediated by binding to a receptor (TR) in the nucleus of target cells (Fig. 1). Two thyroid hormone receptor genes (THRA, THRB) exist on chromosomes 17 and 3 respectively. Each gene undergoes alternate splicing to generate TRα1, TRα2, TRβ1 and TRβ2 isoforms, each with differing tissue distributions (e.g. TRα1 is the predominant isoform in the central nervous system, myocardium, colon and skeletal muscle; TRβ1 is highly expressed in the liver and kidney; TRβ2 plays a major role in negative feedback regulation at the level of the hypothalamus and pituitary)."

My problems include:
- cardiac issues (subclavian steal suggested, dysautonomia with typically high BP and abnormally high HR)
- autonomic and central nervous system dysfunction (my CNS damage is after one of many negligent acts by Irish doctors)
- skeletal muscle problems (cause of severe dystonia still under investigation, muscle biopsy ruled out metabolic causes)
- Kidney issues include rhabdomylosis, chronic kidney cysts, interstitial cystitis, chronic UTIs and that 12 years on lithium that wasn't adequately monitored and frequently at toxic levels
- Colon issues include colitis, dysmotility, diverticulitis, mega colon, ileocecal valve dysfunction, a lot of malabsorption/deficiencies identified with DNA, saliva and blood testing, chronic and severe constipation
- ALT levels were 3 times above normal, and missed by my local doctors, then not adequately investigated. I was not able to get a quantifiable measure of my "fatty liver" in Cork which my London specialist asked for.

You must have done a search without reading the surrounding text. My understanding of all the jargon is limited, yet I picked up this key message throughout every text :

"Reappraisal of the clinical context – in particular exclusion of confounding intercurrent illness or medication usage, coupled with reassessment of thyroid status – should be the first step to resolving such cases."

Regarding the quality of care in Ireland, I've plenty of first hand experience with serious medical negligence (and no recourse but my own determination to find help at our expense). I'm very aware of basic inadequacies in the system that compromise patient safety -- on the simplest of things! Rare disease of course will suffer, despite the goals of 2009, 2013 and 2017 EU doctrines. So a small rT3 test might have to be outsourced for the few in need. It shouldn't be ignored and invalidated though. I can back up every claim I've made.

I cannot swell any more! (Already gained 130 pounds mostly fluid!) It's harmful to everything. If this small test leads to improvement, what's the harm?!

It's disturbing that you two do not understand the value of something so simple for someone so ill. For my peace of mind, I've ordered my tests. If it's not ruled out, I've finally found an answer, inexpensive treatment and better well being!

Arbie

I read in full all the sources that you linked. rT3 is real and there is a blood test available, but I still cannot find anywhere any published reference to the relevance of rT3 in Hashimoto's or any other condition. A mystery.

I'm sorry to hear you have so many medical problems and that you have been treated poorly. It sounds like you have spent a lot of time and money on all of this, so I hope you get some good results.

cait8

Hi folks, sorry to resurrect an old thread but I am in the same situation as the original poster - need the Reverse T3 test to control my NDT levels. I know Medlab in Sandyford definitely TEST Reverse T3 (they emailed me to confirm this and it is also listed on their website: http://www.sonichealthcare.ie/test-information/tests-a-z/tests-r.aspx

Now the problem is, you need to get someone to take your bloods and send it to them... and I have not been able to find anyone to that!! It is so frustrating. Does anyone know GP who might be open to taking these bloods?!!!!

tiegan

https://privatebloodtests.ie/ I have used this company in Ireland - get your local nurse/friend to take the sample and they send you a prepaid envelope to return in. I used to use uk companies, but the courier fee was extortionate!! Good luck

Dingle_berry

Hi, there is a GP over the pharmacy beside the National Gallery that I think she may do it. Just explain what you need it for, I found her to be very collaborative.
Since original post, I found a gp in Maynooth, not sure if I can mention him here, he does an integrative approach to thyroid issues, ndt included, and prices are quite decent, unlike the costs of the gp in stillorgan who may think that we are all millionaires...
I really don't know why we need to explain anyone here why we are asking for a specific blood test, I think we all do our own researches when we feel mistreated by the medical community, and I think that is perfectly right; doctor, endos, gps they are not gods, and don't usually have all the information, formation, interest to work closely with a patient. They are too busy to listen to you every time, so they just follow protocols in this case, but I have always thought that they are interested in minimising your symptoms but they do not want to know how you got there, which in an autoimmune disease is important, or how to prevent what is happening to you. I have felt many times that I had more information on thyroid issues than my gp, so just seeing how much Pannie237 knows amazes me.
If someone is not affected by this matters, I do not understand why they come to this post to question it.

Would you go into the cockpit after a rough landing and tell the pilot how google says he/she could have done it better? Do you shop around for the airline whose pilots land the way you want them to? Or do you trust their professionalism?
Do you go into your solicitor with Google results and tell them to just sign the forms google suggested? Likewise, do you trust the professionalism of your solicitor or do you put more faith in your interpretation of Google?

Blood tests are a tool of medicine. They require training, experience and skill to evaluate. Especially in conjunction with other facts and doubly so for complicated systems like endocrinology.
Telling someone, however indirectly, that they are doing their job wrong and that you know better is bound to get their back up. A doctor puts their licence behind every prescription. That is their livelihood. Something that they worked damn hard to achieve. If you get it wrong they, or their colleagues will work damn hard to save you. If they get it wrong based on what you want will you or your next of kin compensate them if they get struck off by the medical council?

Also this is the Health Sciences forum, the charter specifies that it's for discussion of medical science. Not illness or patients experiences. That's in addition to it being a public internet forum, open to anyone to post. Why post on an open, public forum and then complain when someone replies in a way that doesn't suit you?

locum-motion

Dingle_berry wrote: »

Would you go into the cockpit after a rough landing and tell the pilot how google says he/she could have done it better? Do you shop around for the airline whose pilots land the way you want them to? Or do you trust their professionalism?
Do you go into your solicitor with Google results and tell them to just sign the forms google suggested? Likewise, do you trust the professionalism of your solicitor or do you put more faith in your interpretation of Google?

Blood tests are a tool of medicine. They require training, experience and skill to evaluate. Especially in conjunction with other facts and doubly so for complicated systems like endocrinology.
Telling someone, however indirectly, that they are doing their job wrong and that you know better is bound to get their back up. A doctor puts their licence behind every prescription. That is their livelihood. Something that they worked damn hard to achieve. If you get it wrong they, or their colleagues will work damn hard to save you. If they get it wrong based on what you want will you or your next of kin compensate them if they get struck off by the medical council?

Also this is the Health Sciences forum, the charter specifies that it's for discussion of medical science. Not illness or patients experiences. That's in addition to it being a public internet forum, open to anyone to post. Why post on an open, public forum and then complain when someone replies in a way that doesn't suit you?

I was going to reply to that post earlier, but I'm glad I didn't; Dingle_berry has said what I wanted to say, only much more eloquently than I could have.
It also looks as if the post D_B was responding to has been deleted since. So I'm glad it was quoted, and therefor is preserved for posterity.

laserlad2010

I'm not commenting on any specific persons experience but coincidentally I am going to state that I believe, strongly, that there are many private hospitals who will tell someone with enough money absolutely anything they want to hear.

Having "specialists" from USA when you're based in Europe has an extremely strong PPV for not much being wrong with you, to put it extremely politely