I know I should know this one but wondered if others could advise. My youngest is 13 and has Down syndrome, at some point in the past I remember being told that her blood test had shown antibodies . Was assured that everything would be monitored and being a stressed out fool took them at their word.
It's only last few years I have realised that GP's know less about this subject than they should. So originally monitoring was by paediatrician at hospital and I assume therefore full range of test done.(as they identified antibodies) However think about 5 years ago they started saying GP will test now. She is supposed to be tested every 12 months but it never gets done until I realise it's overdue and I start chasing it up. So it has dawned on me , what point is it chasing GP for test when GP only seems to test TSH and T4. Think I should again request that I get her tested at hospital, so why if they identified antibodies do they not treat or at least monitor more closely? Given that Hashi's is quite common in adults with DS surely early identification and treatment would be beneficial. Thoughts anyone?
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Polo22
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once raised Thyroid Peroxidase antibodies have been detected , then NHS should be monitoring TSH (and preferably fT4) annually.
there is no need to retest TPOab once they have been found to be over range .
Raised TPOab give them an early warning to look out for the development of hypothyroidism (with or/ without symptoms) ..
There is no NHS treatment available for the autoimmune problem itself ...only the hypothyroidism can be treated if/ when it develops.
If there are no symptoms of hypothyroidism. and fT4 is still in range , then continued monitoring is ok. (but only if there are no symptoms)
If TSH goes a little over range (but still under 10) then a decision to start treatment for 'sub clinical hypothyroidism' is based on a discussion with GP depending on whether there are any symptoms that are causing issues.......('sub clinical' = TSH over range while fT4 still within range)
If symptoms of hypothyroidism develop ,or if TSH goes over 10 (whichever happens first ), then treatment is needed.
But not everyone with raised TPOab will go onto have symptoms of hypothyroidism, or become overtly hypothyroid ...... ( 'overt' = TSH over range with fT4 under range )
"1.5 Managing and monitoring subclinical hypothyroidism
Tests for people with confirmed subclinical hypothyroidism
Adults
1.5.1Consider measuring TPOAbs for adults with TSH levels above the reference range, but do not repeat TPOAbs testing.
Treating subclinical hypothyroidism
1.5.2When discussing whether or not to start treatment for subclinical hypothyroidism, take into account features that might suggest underlying thyroid disease, such as symptoms of hypothyroidism, previous radioactive iodine treatment or thyroid surgery, or raised levels of thyroid autoantibodies.
Adults
1.5.3Consider levothyroxine for adults with subclinical hypothyroidism who have a TSH of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow the recommendations in section 1.4 on follow-up and monitoring of hypothyroidism.
1.5.4Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:
~ a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and
~ symptoms of hypothyroidism.
If symptoms do not improve after starting levothyroxine, re-measure TSH and if the level remains raised, adjust the dose. If symptoms persist when serum TSH is within the reference range, consider stopping levothyroxine and follow the recommendations on monitoring untreated subclinical hypothyroidism and monitoring after stopping treatment.
Children and young people aged 2 years and over
1.5.5Consider levothyroxine for children aged 2 years and over and young people with subclinical hypothyroidism who have:
~ a TSH level of 20 mlU/litre or higher, or
~ a TSH level between 10 and 20 mlU/litre on 2 separate occasions 3 months apart, or
~ a TSH level between 5 and 10 mlU/litre on 2 separate occasions 3 months apart, and
thyroid dysgenesis (an underdeveloped thyroid gland), or
signs or symptoms of thyroid dysfunction.
During levothyroxine treatment, follow the recommendations in section 1.4 on follow-up and monitoring."
Some other sections of this guideline may be more relevant for your situation , depending on what your daughters TSH results were in the past and most recent.
I'd love to know her results also but it's beyond farcical getting anywhere. Have been trying to get her added to my account on MY GP app, so I can organise her px , tests , vaccinations etc . It is beyond infuriating. Apparently she has to give consent for me to advocate for her, which is great but she doesn't understand what consent is. Lost me temper almost the other month, took her into surgery and stood her in front of the staff and said " Go on Orla tell the nice people you have capacity to give consent to my having access to your health records" Lots of mumbling, awkward silence then Orla gave them the thumbs up and said "Dink". 🤦♀️
Orla had been classed as quite tall and fairly slim or at least in proportion, 98th percentile (DS has own growth charts) until about 3 years ago. Now she is getting rather round, seems to have stopped growing height wise. Apparently growth velocity in the year prior to treatment starting is significantly impacted and increased in 7 out of 8 children in the year following the start of treatment., compared with euthyroid control group of same age and sex.
It's a nightmare navigating healthcare/social care/education when your child is disabled.
Thank you though tattybogle , for response at point of throwing my dummy out the pram.
In theory testing TSH & FT4 should detect if thyroid levels begin to drop.
Doctors don’t treat antibodies and if positive in past, that gives a strong argument for close monitoring.
Treatment wouldn’t commences until TSH high (over range 2x 3 months apart or over 10. Or below range FT4.
Ideally FT3 is also tested but there no guarantee the hospital would test this either as labs automatically test TSH & FT4. FT3 often not tested unless TSH low & FT4 high.
Do you obtain results? I recommend you do and track them closely. Including obtaining the results showing positive antibodies.
If TSH & FT4 are in range GP will file as ok, no further action, but if they look borderline abnormal you can push for earlier repeat testing.
Ideally she will have tests as recommended booking draw early morning fasting overnight, lots of water for hydration. Cease any supplements containing biotin for 3 days before test. This will show highest TSH.
I think there are private companies which offer tests for children, if you wanted a full picture (with FT3, antibodies & key nutrients) & you would likely need to arrange venous draw.
Thanks for response, longer reply to tattybogle above. It's so infuriating , if I have one more Dr dismiss concerns with "it's to be expected with DS" I may not be so reserved, 😡
“It's a nightmare navigating healthcare/social care/education when your child is disabled”
I hear you! Been in similar myself - argued with doctors, escaped from hospitals, cried in council buildings & came close to tribunal case - LEA backed down last minute (they hadn’t followed their own rules).
If digital access is not being set up quickly, press for printed copies.
Usually children can give consent to allow parents access to medical records but if child or young person doesn’t have capacity it is permissible.
I don’t think their understanding of the rules & willingness to following them is being applied.
It may be that they are unfamiliar with the situation or it could possibly be a deliberate attempt to delay. Hoping many would accept being fobbed off & don’t persist.
Don’t give up, keep pushing (politely) & make it clear you’ll be following up for an update again tomorrow…Monday..ect.
there is a good functional GP with a specialism in hashimoto’s whose daughter also has Down syndrome. He has talks a lot about general things he has done to help her. Shall I send you his name?
Sorry to butt in, but could you send me his name, too? I have an adult child with Downs, he lives in supported living. He has his regular thyroid tests, but the staff at his supported living just report back to me that the GP says his results are 'normal' and we all know that's not necessarily the case!
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