My husband is on Lithium and his regular bloods from that clinic showed his thyroid results were off so he was sent to the GP for testing. The nurse said his results were fine. We haven’t been able to access the results and I imagine they only did TSH or basic tests.
I want to get our own tests done. My question is, does he need both sets of antibodies testing or is just TPO enough? The place I was recommended for testing here in the UK sell the thyroid peroxidase antibody test separately to the Ft4, Ft3, TSH and TPO antibodies test. I just wanted to check before I spend the extra money if it’s not needed.
Thanks
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DownAndDesperate
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If you do not have any reason to think he has an autoimmune thyroid issue, there is no point in getting either TPOab or TGab done. Lithium is a perfectly understandable reason for him having thyroid issues without the need to consider autoimmunity.
Of course, he could have autoimmune issues as well, but seems to me that the most important tests are the trio - TSH, FT4 and FT3.
Maybe the nurse could do with a bit of easy reading?
This is a link to a very good article in the British Medical Journal discussing what the 'normal range' really is. Very readable.
The normal range: it is not normal and it is not a range
The place I was recommended for testing here in the UK sell the thyroid peroxidase antibody test separately to the Ft4, Ft3, TSH and TPO antibodies test.
Thyroid peroxidas antibody test and TPO antibody test are the same thing.
We haven’t been able to access the results and I imagine they only did TSH or basic tests.
In the UK it is your legal right to have a print-out of the results. Ask at reception, they might make access difficult, but they cannot out-right refuse.
That all sounds very strange! They are YOUR results. The law says so. What was this place you went to? I think you would be better off with one of the TUK approved testing companies:
You said: The place I was recommended for testing here in the UK... That sounds to me like you went for private testing. Sorry if I've got it wrong, but that's what I understood.
Oh, sorry. I was referring to a company recommended below by SlowDragon for thyroid testing for myself. I was looking there for my husband. There’s no problem with the place other than the peroxidase antibodies are tested separately rather than all together like they were in the test I got initially from medichecks.
It was my husband that asked, not me. But yes, they refused to give him a print out of the results unless he sees the doctor even though the results were discussed with him by a nurse (by discussed I mean she said they were fine and sent him on his way).
If you have a high temperature, you can see on a thermometer.
If you have a high blood pressure, you can see on a monitor.
If you have a high heart rate, you can see on all too many devices like fitbit and Apple watches.
If you burn your finger, break your leg, or so many other things, you can see directly.
Yet they keep test results secret and prevent access until "doctor has said OK".
It is just a matter of luck (and technological limits) which mean you can't know your results until they tell you. It should NEVER be used as a means of denying access.
Exactly! I think doctors like to gatekeep to feel powerful. If we don’t have the results we can’t question them or do our own research or figure out that they’re doing a poor job.
you need to get vitamin D, folate, ferritin and B12 tested as well
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
So you would suggest getting the full test this time? The vitamin tests were all done by the clinic and came back low. They’ve prescribed him folic acid but I have no idea why they haven’t prescribed anything else. I’ve told him to follow it up with the doctors.
We’re signed up for everything at our doctors but they don’t actually show very much information. Certainly not test results. We tried econsult that is specifically for discussing test results and they replied saying that they don’t discuss test results through econsult and to make an appointment with a doctor. We asked reception and they said they couldn’t print out results without the doctors permission first. And it’s impossible to get doctors appointments. Plus my husband never gets things like this done because of executive function issues so I figured I can order the test and have him do it and that would be more in my control. Our doctors are really terrible. We’re in the middle of trying to find somewhere better but reviews for GPs are all very mixed.
Hi there, I’m sorry you are getting fobbed off with ‘nothing wrong’ responses when his lithium prescriber has clearly raised a red flag.
In the first instance, can you ask for those results? They haven’t made it up!!
The effects of lithium on a patient’s thyroid is well documented and I’d suggest an Endocrinologist appt would be best if you can get it. But, in the first instance get TSH, T4 and T3 tested beforehand. I’d get these, then make an appt with his GP and request an Endo referral. Dig in - GPs know v little about MH prescribing or thyroid . You cannot accept what ‘the nurse’ has told you.
Unfortunately, GPs are universally ignorant in these circumstance. I recently managed to find a new GP for my daughter and took her to appointments where I explained that she had 3 different MH prescribers, none of which talked to each other, despite obvious issues with her physical health. “We’re not medical” is the reply you get when asking questions. This GP has been v helpful and arranged appropriate referrals and investigations. But it has been a battle.
I do understand how you feel; there is a shockingly massive disconnect between health providers in the NHS and families are left to act as care-coordinators and have to advocate for their loved ones.
We’ve had that experience a lot too. I have various conditions that should all be under different specialists. I went to the GP a couple of weeks ago and they said that I was too complicated and they can’t help me with everything and to just go to my endocrinologist. The last follow up app took a year (was told 3-4 months) and I have things that need referrals to others. They deal with one symptom at a time and ignore everything else.
We have the results from the lithium clinic but they’re T4 only and this board previously said that it doesn’t tell us enough. There’s no way our doctors would do a referral based on tests they’ve said are fine though.
I’m sorry you’re experiencing these problems too. It must be so difficult when it’s your child too.
It’s always worth challenging as politely as you can though. I vividly recall practically begging for an Endo referral for myself and in the end the Dr said “well, I’ll do a referral (to shut you up was unsaid) but I really can’t see what he can do “. I had to bite my tongue hard to say nothing. But lo and behold, the Endo changed my meds completely and I am so glad I pushed for it.
But that was one instance . We really are left to find a way round the NHS - without a map. The MH Trust we deal with publish completely unfathomable ‘pathways’ on their website. They are a work of fiction. I get a different answer to any question if I ask more than one person. She does have CPN who is caring but knows no more than we do and has to battle just as much as we do to get sense anywhere.
Wishing better outcomes for all of us . It’s us who have to pick up the pieces and we deserve to be listened to.
Both my husband and myself really struggle with any sort of confrontation. I wish I knew how to advocate for myself better but I just close up or cry. I’m glad you were able to advocate for yourself.
Well, it took me a long, long time to do it - don’t be too impressed with me! It really isn’t easy. Try not to give up - keep looking for someone who will listen. You deserve appropriate treatment and you’re not asking for anything else.
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