RESULTS FROM ADDENBROOKES for my daughter - Thyroid UK

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RESULTS FROM ADDENBROOKES for my daughter

Dolphin40 profile image
19 Replies

Hi everyone,

So i got the call from GOSH today and the Endo said Addenbrookes did find assay interference with my daughter’s T4 and T3 results (read higher than they actually are) but that the TSH was correct. She has therefore suggested treating her based on her TSH and increasing her dose of thyroxine back up to 37.5. I don’t have the exact ranges of the sample sent to Addenbrookes but it was something like;

TSH 22

FT4 14 (9-22)

FT3 5.4 (5-7)

She also advised Addenbrookes have said they will test for RTH and she walk get a cardiologist to review this SVT diagnosis my daughter got 8 months prior to her Hashimotos diagnosis.

Her Endo said she doesn’t need T3, NDT and advised that thyroxine was her only option. She also said she doesn’t need an MRI or her Pituitary checked .

My concerns/queries are .....

1. Will she always have assay interference then, making it difficult to know what are T4/T3 levels are?

2. Could this alone explain the erratic levels since March? Im not convinced. There were suggestions from people on here that her TSH could have assay interference but I hadn’t heard the T4/T3 could. Is this not too common? Why/how does it happen?

3. Would you still suggest arranging an MRI/checking pituitary and if so does anyone know where you can do this in the UK for children?

4. Im conflicted whether or not to increase her Eltroxin. She was better on 37.5 but her hair loss was awful. She also had hyper symptoms. We have a functional dr who advised Eltroxin was not working for her and that we should try something else eg NDT. Its difficult when you have 2 fantastic practitioners but they differ completely regarding treatment.

We have recently had tests back we did privately and my daughter was found to have mold toxins in her body as well as possible infections which could have triggered this autoimmune response.

Thanks so much for your help.

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19 Replies
Nanaedake profile image
Nanaedake

What did the Endocrinologist say was the cause of the assay interference? What did the lab report say? For example, biotin, which is often contained in B complex or multivitamin can cause interference.

Personally, if it were my daughter, I would stick with NHS to get straightforward diagnosis of daughter's condition.

On this forum we often see poor advice on thyroid conditions by functional doctors. Not saying ALL advice is poor. However, GOSH are very experienced in children's conditions and are likely to have the best facilities for lab tests and analysis.

If your Endo thinks that other tests such as pituitary are unnecessary then in this case I would go with that advice as the Endocrinologist you have is very experienced in children's care. Sounds like your Endo is being thorough.

Dolphin40 profile image
Dolphin40 in reply to Nanaedake

Hi,

Thanks for your reply....

The Endo didn’t say cause which is strange as i was asking her how il manage meds now without accurate T3/T4s etc .....

My daughter has never taken biotin x

Nanaedake profile image
Nanaedake in reply to Dolphin40

Yes, strange they can't say what the assay interference is caused by. Are they going to retest?

jimh111 profile image
jimh111

I believe fT3 and fT4 can also have assay interference but diogenes is the expert. I assume they have run an assay that has given accurate results and the latest numbers are “real”. i.e. accurate.

In RTH fT3 and/or fT4 are usually high with a normal or elevated TSH. However, if her thyroid is packing in as well there’s no way it will be able to secrete high levels of hormone and so we might see results like she has.

It seems reasonable to increase her levothyroxine. If it’s straightforward primary hypothyroidism then going by TSH will get her closer to a euthyroid state. I’m not advocating relying on TSH, just using it as a starter to get her closer to the right level. If she has RTH she will definitely need more hormone so an increase now will help.

Definitely get Addenbrooke’s to check for RTH. If she has RTH it will take time to sort out and she may be prescribed thyroid drugs other than levothyroxine or liothyronine, drugs that have specific actions.

My view (I’m not a doctor) is that the pituitary looks fine. If the high TSH was due to a pituitary problem it would be stimulating the thyroid to secrete excess hormone and she would have been very hyper.

I would avoid liothyronine and NDT until Addenbrooke’s have completed their investigations. With liothyronine it’s almost impossible to make sense of blood test results, especially in her case where they are unusual and informative. A young child can’t describe all her symptoms eloquently. NDT has similar issues and may make antibody problems worse as it is thyroid tissue, the stuff that antibodies are interested in.

I would keep a diary of her response to treatment and perhaps ask if the latest results are accurate and what sort of assay needs to be used in future.

Fruitandnutcase profile image
Fruitandnutcase in reply to jimh111

Couldn’t agree more on keeping a diary in response to treatment. When I was being treated for Graves I did that. Generally I just jotted down a quick note but it was enough to use to prove to my GP that I needed an increase in the levothyroxine part of my black and replace treatment. First time the doctor didn’t want to interfere with the endo’s prescription she gave me amitriptyline which was a total waste of time and I had stopped it by the time I saw the endo - the endo rolled her eyes and said that wouldn’t have worked. She increased my levothyroxine. Next time it happened I was able to prove to the GP that I was in fact needing more levo and she very cautiously increased it for me saying she didn’t want me to become hyper again - neither did I because I’d been there already - so slight increase and it made an enormous difference. So I was very glad I’d kept detailed notes of my response to treatment. I also made quick ck notes as to how I felt on a day to day basis and when I felt I was making no progress, when I read them back I realised that even on a horrible day I was so much better than I had been

Dolphin40 profile image
Dolphin40 in reply to jimh111

Hi,

Thanks so much for your reply....

Do you think she could do with a scan then, to see what her thyroid looks like?

In terms of RTH im not sure how much they are doing to be honest. The endo said they will do genetic testing but iv read you can still have resistance even if nothing shows up in these tests.

Im just not convinced that all these fluctuations are just from assay interference but she seemed to be getting annoyed when I asked questions. She wasn’t that convincing if im honest and when i asked where we would test my daughter going forward, she said locally is fine and that we will just go off the TSH which im very uncomfortable with.

jimh111 profile image
jimh111 in reply to Dolphin40

Scanning her thyroid might show something up but it wouldn't explain her high TSH, it might be a red herring that lets them off a proper investigation.

It's important to rule out RTH so I would write to the endo and ask for a referral to Addenbrooke's to investigate RTH. (I know she is at Addenbrooke's but she doesn't seem that helpful so go for a specific referral). If it's not RTH there are lots of endos that might help but Addenbrooke's is the only RTH centre so it seems a good tactic to give this priority at the moment.

You are correct in that only about 80% (I think) of RTH cases have a genetic mutation but they still diagnose based on blood tests, signs and symptoms, and some metabolic tests they can do.

I find that when professionals get impatient or annoyed or technical it usually means they are not that good. The best people can and are willing to explain things clearly.

helvella profile image
helvellaAdministratorThyroid UK

There are many possible causes of assay interference. Biotin has become a major issue for many reasons. Not least that many more people are taking considerable amounts of biotin.

If assay interference has been identified, and it is known that machine A is a problem but machine B isn't, then it is simple enough to make sure that tests are done using machine B.

In the case of biotin, simply stopping any supplementation with biotin a week before a test is sufficient.

Biotin can affect TSH, Free T4 and Free T3 tests (and others).

But there are other possible causes of interference. For example, some people have antibodies to TSH. When a TSH antibody attaches to a molecule of TSH, it forms something called macro-TSH. In some TSH tests, this shows as raised TSH. Similarly, some people have antibodies to T4, some to T3.

And:

Contact with sheep! (Probably antibodies.)

Heterophile antibodies.

Anti-ruthenium antibodies.

... and probably several other possibilities.

It is likely that some assays are unaffected. Or you might identify what is interfering. Then you will know what needs to be done - avoid the cause or use tests which are not subject to those forms of interference.

Interference could be behind erratic levels. Especially if whatever is causing the issues itself varies - or tests have been done using different technologies.

Remember, it doesn't matter how common anything is. :-) If it is happening, and it sounds as if that is now accepted, she could be the only person on the planet having that particular form of interference.

Dolphin40 profile image
Dolphin40 in reply to helvella

Hi,

Thanks for your reply....

My daughter has never had biotin.

The endo said she can continue to be tested where she was before eg locally or at GOSH which is worrying because we will never see the true results. She said we are to just go by her TSH ‘which is correct’. I feel very uncomfortable with this.

How can they/i find out what is causing the interference please. They cleary don’t know or im sure she would have told me.

Thank you

helvella profile image
helvellaAdministratorThyroid UK in reply to Dolphin40

I'm no expert and, other than what I have picked up, don't know much about interference.

If antibodies are the cause, I think it is possible to treat the sample with PEG (Polyethylene glycol) before analysis.

I agree with you - it seems a nonsense to do tests when interference has been demonstrated.

Noddysenior profile image
Noddysenior

I’d like to help, but I’ve been waiting a year for an appointment at Addenbrookes, so I’m still no nearer to understanding my high/non-suppressed TSH, and elevated fT4 and fT3. It’s ridiculous the time I’m being made to wait!

bantam12 profile image
bantam12 in reply to Noddysenior

Endocrinology at Addenbrookes let us down badly !! can't say anymore.

Moonglo profile image
Moonglo in reply to bantam12

Wasn’t impressed either.

jimh111 profile image
jimh111 in reply to Noddysenior

If I remember correctly Dolphin's little girl is already being seen by an ednocrinologist who also works at Addenbrooke's so she may have a foot in the door. It is useful to know about the long waits (no suprise) so that Dolphin can chase them up if necessary. They may be more responsive with children, if only because it's one of their research interests.

Noddysenior profile image
Noddysenior in reply to jimh111

I have an endocrinologist who said he has a friend at Addenbrookes, but I’m not sure that’s helping me 😀. And I’m not sure “having a foot in the door” should be the basis for appointments. I wasn’t suggesting that anyway, I was merely venting my frustration at the slowness of getting properly diagnosed and a treatment plan if there is one (in total it is in fact two years since it was clear I had a problem). I wish Dolphin’s daughter all the best, not least because we clearly have a similar issue with our thyroid.

jimh111 profile image
jimh111 in reply to Noddysenior

The little girl is being seen by Dr Schoenmakers who is an endocrinologist who also works at Addenbrooke’s. So, she has a foot in the door in this sense and hopefully they will check for RTH soon.

Moonglo profile image
Moonglo in reply to jimh111

They took 3 weeks to provide a report on my scan, only after I chased them. It was the bare minimum, full of jargon and no mention of the discussion I had with the consultant. My GP never received it either. So I haven’t been impressed.

Dolphin40 profile image
Dolphin40 in reply to Noddysenior

Sorry to hear that. Its so frustrating!

Noddysenior profile image
Noddysenior

It looks like in my case, it is an administrative cock-up that is responsible. In two years, I can now count at least five administrative cock-ups across one gp practice and three different hospitals. The NHS is a truly magnificent institution, but it lets itself down by constantly failing to organise what should be the simplest of administrative tasks.

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