I'm currently on 5mg Carbimazole, reduced from 10mg 3 weeks ago.
Since this decrease TSH has gone down from 0.2, T3 has increased from 4.2 and T4 has increased from (below range) 8.9.
Especially interested if anyone can interpret the antibodies. No point in asking GPs or Endo as I was told I'm basically on my own if I got these tests done privately the NHS "can't act on any results".
Especially interested if anyone can interpret the antibodies.
They are high, they are way over range. The range is 0 - 0.81 and your result is 32
Yes, I was just wondering what the combination of high everything (TG and TRAb) might mean
Sorry, I only noticed the TSH Receptor antibodies, I'm on my PC and scrolled down to read your post so the rest of the picture was obscured.
So to me that looks like you have both Graves and Hashimoto's running in tandem. With all of them so high at the time of the test, I can't imagine what symptoms you were having!
I don't have any experience of this, hopefully someone who knows more about it will come along and offer more help.
Hi Datatraveller, I was trying to reply at your other post Positive TPO, TG and TRAB, but it seems to have been deleted. I was replying to your last question about being hypo and antibodies levels.
As I only have Graves, I can only comment on your results from a Graves perspective. But with the other two antibodies also very high, I am sure there are implications. And as suggested by others, you probably do not just have Graves.
From a Graves view point, your TraB level is very high. Mine too was high and it took about 2.5 years on carbimazole, and some supplements, and big lifestyle changes, before it started to come down.
Of course u are still sorting getting FT3 and TSH into range, I do want to point out its equally important to get the antibodies levels down. TraB is an indicator of disease activity in Graves.
On hindsight, i think my high TraB levels in the 3 years after diagnosis, played a large part in all the horrible relapses I had, and pushed me to developing other serious autoimmune diseases.
Regarding the NHS being unable to act on private test results, that's bunkum. 😊 There is guidance to GPs that if a patient sees a private specialist who recommends treatment on the NHS, the patient can be advised that they need to return to the private specialist for that treatment; (although confusingly there's also guidance that says patients can opt in and out of NHS care and not be disadvantaged by doing so, in the treatment of their condition), but that is nothing to do with not acknowledging the results of a patient's private blood tests. What if the patient's result indicated something critically dire, like say Ebola - would a GP say he couldn't/shouldn't act on these results I wonder. At my last Endo appt I showed my Endo my Medichecks results, and he copied them down in my file, saying they showed I needed to increase my dose of private T3. I then showed him my DIO2 report and he made me promise to email it to him for my file, and said that he would support my request to have my NHS T3 reinstated on the basis of the results. Rejecting a private test result simply because it wasn't ordered by the GP smacks of sour grapes and is entirely unfounded.
I did think that it would be negligent to ignore relevant information, but was too demoralised to think too much about it.
I guess the real question is how much do I want to (further) alienate my GP, who would probably just tell me to discuss it with the Endo (while putting some kind of secret GP code for "annoying patient who wants to understand her condition" on my notes).
The problem is I'm not due to see the Endo for another 3 months, and I'm not sure how she would react to the private test.
Yes I understand, I was like that for a while when my T3 was withdrawn. You could always email the results to your Endo's PA with a single question such as "Do these results indicate I need to increase my Carbimazole back to 10 mg?" - it wouldn't require much thinking time on her behalf so you'd be more likely to get an answer. Just a suggestion.
A really good suggestion - thanks
Having had many 'run ins' with Doctors, Endo's and NHS system I discovered the great and the poor. I had graves thyroid and eye disease and poor service from 1st my Optician then the GP. When I demanded to go private I was seen very quickly by a hospital, as I wrote to the GP and put it in writing that they were failing me.
My advice would be to request a blood test from your GP and ask them to act upon that, if they fail to do that request a letter to go private. I know they can be a real pain but unless you keep at them they won't see the priority. Very few of them are 'experts' imo and often seem to be casual about such things until they are staring them in the face. I ended up with a double orbital decompression surgery and the eye hospital staff were just brilliant and very understanding. Cannot say the same about those I met on the journey there!
I am on 5mg Carbimazole and will be according to my Endo for rest of my life as have managed to get all levels back into normal range. My FT4 about same as you, but your FT3 and TSH levels alone suggest something is not as it needs to be. When I increased my dose to 10mg my levels of T4 went right down to very low single figures, when stopped Carbimazole they shot up to 27, so back to 5mg and all seems well at the moment. Sometimes they will leave it too long until it becomes obvious. Wish you the best.
Glad to hear you're doing well at the moment, and thanks for the advice.
I have requested blood tests from my GP but their attitude seems to be that the Endo has everything under control. My requests for antibody tests and Vitamin D tests have been refused (by GPs) as unnecessary.
My Endo appointments are 4-monthly, next one beginning of July, which seems a long time when my levels are still fluctuating. I don't have much faith in her as after my last appointment she wrote in my clinic letter that I was now euthyroid, quoting my (then) under-range T4 of 8.9 (range 10-20).
I did follow Maisie Gray's advice on this thread and email these results to my Endo - no response so far but all my previous experiences make me expect a frosty reception to my audacity.
I was only diagnosed last November so I'm hoping that my FT3 and TSH levels are still "settling down". I really have no idea, though, and feel like I'm pretty much on my own with the "professionals" but am very grateful for the help and advice I receive here.
I'm not sure about asking for a letter to go private as I'm virtually penniless and couldn't possibly pay to go private. Just getting the bloods done has wiped me out financially and I feel very resentful that I had to do this.
I will try to be more assertive in future but it's very difficult when the highly trained professionals use that position to make you feel like an uneducated hypochondriac just for wanting to understand your condition.
You are doing great by taking hold of the helm, many on here have been through so similar things. We start off in the dark, then we start to take notice of what is happening to us and we go into the fog. Then we question and research and discover to bring us into the dawn light, then we face the day!
You have the right to a second opinion from both doctors and the more 'expert' Endocrinologist. When you request a 2nd opinion they take notice, when you put things in writing they take notice. The way it was put to me was from the GP "they (Endo) are the experts we do what they say" from the Endo " we are just advisors and not managers of your health" that was a light bulb moment, a ahah no-one is taking responsibility or managing my case when it comes down to it until something goes so wrong or is obviously bad.
I then got more assertive and started to manage my own health. I learnt I could have access to my records! that was a huge start, then found they have to give me either verbally or written my blood results when I asked. Then came on here asked for help and guidance, only when I got to Bristol Eye Hospital did I feel I was been listened by the NHS to be cared for as I should be. They were and still are so supportive, it was their instance my bloods needed to become stabilised and the 'management' of drugs and tests needed to be more regular to assist with that. So I started to go back to the GP and say I am not well and need a blood test as feel like I am going under so they would give me a blood test in between the ones at the hospital which they wanted every 8 weeks!
Once I learnt to be a bit more 'in charge' things started to happen which got everything coming together. The system is at fault here and not the 'professionals' we are living in a time when more and more people are in need of help and so budget and staffing levels begin to get very stretched. I have at times heard the most horrendous preventable stories even near deaths as GP's and Endo's and Surgeons have not 'managed' the patient forgot to get bloods and the person concerned ended up way under and into intensive care for weeks, all because everyone was advising not managing! Enough said.
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