Hi! I'm new to this site and just wondered if anyone has used any of the private blood tests from the companies on the Thyroid UK website.
I have Hashimotos and tbh, haven't felt well for *years*. I get cross with myself as when I go to the GPs, brain fog or anxiety just leave me wanting to get in and get out. I once felt brave enough to bring up the problem of finding exercise excruciating since being diagnosed and leaving me with flu-like symptoms for days but was literally scoffed at, like "Yeah that's what all the fatties say...!" and was told then that she (my GP) wouldn't have put me on any medication for Hashimoto's as she thinks it will clear up.
So, hence the question about private blood tests really.
Has anyone used them? Did it result in a clearer set of results that meant different medication (I am wondering about NDT) and actually feeling "okay" for once?
Hope someone can help - any experience/thoughts will be greatly appreciated.
Sorry,probably being dim here .. You were tested for antibodies which show Hashis .. What was your tsh when last tested? You don't usually get an antibody test in the uk unless your tsh is high. Are you on medication?
A private blood test will give you your tsh t4 and t3 ... As you know the nhs won't usually test t3 and often just test tsh. A fuller panel may give you a better idea of what is going on, but it is unlikely to change your gps mind, especially if she imagines that Hashis will go away by itself.
You sound under medicated, but if you post results here and your current level of levo others will comment.
How are your ferritin, b12, vit d levels ... Is your go refusing to check those?
Welcome to the forum,anyway.
in reply to
OMG. I don't know. I'm sorry. At the moment, I'm hyperthyroid; i was on 100mcg OD. I'm now on 100mcg every other day. I will get the results and post.
I don't know if they did antibodies. This is what I can remember:-
"You have Hashimoto's disease. Congratulations. You can now get free prescriptions"
I'm going to order some bloods tests and bypass GP.
I also have pernicious aneamia but GP limits B12 to once every three months. I circumvent GP now and buy my own B12 online.
I need to get to my backside into gear. I can't bear this fog - l need to get as active as l can.
I have used blue horizon and genova diagnostics several times. They are accredited labs and useful if you want to work out exactly what is going on. Of course your doctor will either try to discredit them, or pretend not to be able to understand the results, but once you know exactly what is happening, you get better treatment or a new doc.
How is the overactive ohase of Hashimotos affecting you? I found it terrible, was way too hot, couldnt sleep, couldnt sit still, lost a lot if weight and couldnt be bothered to listen to the end of a sentence. I had oreviously benn hypo and undiagnosed, but i went to see the doc in my hyper phase and frightened her half to death. It was then that she worked out i might have thyroid problems.
Its a bit miserable, though it doesnt really last that long.... Eventually you settle in to being permanently underactive and the correct meds sort you out.
Your doctor sounds a bit irresponsible in not helping you out with meds.... Suggest you have a look at the book by endocrinologist Antony Toft... Download from amazon for a few £. He is respected by the medics, and he says hashimotos should be treated early so as to nip problems in the bud. Will add a link to the book in a few seconds...
Hi G, being hyper is worse then being hypo, I find. I can't sleep, am on edge and my skin breaks out in weird rashes. I also have to eat (it feels like) every 20 minutes as I'm ravenous. I feel like I'm going slowly maaaad!!! Plus my ears! Good grief!
My GP practice is quite big, I find they're wonderful for tonsillitis but anything complicated is frustrating and demotivating. I'm sure we all have our own horror stories... :0(
I've bought that book - thanks!
Hope you're doing okay,
H x
P.S. Will use both the Geneva and Blue Horizons test. x
I've used the Blue Horizons home fingerpick test for a long time. It's very easy to do and very reliable. I get the Thyroid 10 test which tests T3, 4, TSH, ferritin, folates, antibodies, B12 and possibly something else I can't remember. Definitely worth using.
No,I do it purely for my own information. I've never told my GP I have it done. I started when they were talking about radio active iodine being the next step should the block and replace not fx my gGraves. I just didn't like the idea that they would do that without ever having checked my T3 but there was no way they were going t test my T3. It was asked for several times and never done by the lab so I just quietly went ahead and used BH. I have t say I just loved going t my endo consultations 'knowing' what my bloods were going t be like. I used to get bloods done on the NHS a week before I went to the endo and while the lab ranges were not the same as the NHS the position of my bloods within each set of tests was similar.
I also used City Assays for vitamin D - there was no way either the endo or my GP were going to request that. With the vitamin D you order and pay by phone and you are sent a kit, yu use the lancet and put drops of blood on special parts of a card. Results arrive by email three days later. I can recommend them too.
Thank you for considering our services - I think you'll find how your own GP views the results is largely down to your GP. The labs we use are accredited and used by NHS trusts, and we can provide you with the relevant information on request.
Most GPs are OK, but there are some that will dismiss them out of hand.
I have just ordered the Thyriod check PLUS TWELVE. I am expecting the results to dismissed tbh, but at that point I'll ask for a second opinion and an Endo referral. But you never know - I may get a doctor that's having a decent morning and has an open mind...
Hah, yes. MY GP refused to accept my ferritin results from BH and insisted on re-testing. And the results were even lower. He should have saved the NHS's money. Then he wouldn't prescribe iron, but spent even more dosh on tests with gastroenterology and nuclear medicine which found ... nothing! There does tend to be a lot of "not invented here" in the NHS.
Have you ever tried going gluten free? some people on this forum find that this reduces their antibody count dramatically so they no longer get hyper symptoms. They are still hypothyroid, but don't get the 'hashi's flares' that cause the hyper symptoms. It doesn't work for everyone, and I think it can take 6-8 weeks to really see whether it works or not. I haven't done it myself, but then I have never (so far) gone through a hyper phase.
Funnily enough, I am going to look into this. It's only since joining last night and learning about "leaky guts" etc, that I've even considered taking a more indepth look at all this.
Many, many thanks for your suggestion! Hope you're feeling well.
I went totally GF in September, had bloods done in December and my antibodies had dropped a lot.
One (can't remember which) had gone well into the normal range and the other while still over the limit was half of what it was before.
It's not difficult to do. It's easy to do at home and eating out is fairly easy too. You can almost always get GF cakes if you go out for tea but I find since going GF I just don't have the urge to snack.
Hi eeng, I started GF in September last year. It as helped me with my gut issues ( were really bad ) and I wish I'd known about it years ago.
I am trying to persuade family members of the benefits. My adult daughter started this week , so I am very pleased about that.
I am Hashi's and the flare is just beginning to subside. My thyroid gland is quite small now ( recent scan) after having RAI over 20 years ago. (wouldn't have agreed to that had I been better informed then!).
My 9 year old granddaughter who is type 1 Diabetic is now gluten free too.
It seems like a no brainer to me and would recommend it even if healthy.
My doctor finally agreed to B12 bloodtest. I ordered the Blue Horizon test and when I went to the NHS hospital, I asked them to fill the other vial with blood. So 1 for NHS and 1 for Blue Horizon.The phlebotomist said they often get asked and it is not a problem. I am still waiting for results but I am hoping that NHS B12 results are similar to Blue Horizon. Hopefully the doctor will look more favourably at all the results. I already get Vit D on prescription with Levothyroxine.
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