My 15 year old granddaughter has thyroid problems(hypo) associated with her having coeliac disease. Her condition is monitored (TSH is currently 5) and it seems to be a case of "wait and see" and the thyroid may correct itself. I understand this but the symptoms of feeling unwell, low energy etc from both illnesses mean she is losing time off school in her GCSE year and also she is looking to go into a sports-related career. Does anyone have experience of anything that could help her symptoms
I have a thyroid problem myself and on medication so know something about it but her case is very different.
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Dunbar25
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Many thanks for getting back to me. She was diagnosed coeliac about 5 years ago but her fatigue and feeling unwell seems to have been worse since onset of puberty and have become significantly worse recently. I know she is being monitored for vitamin and iron levels etc. I will pass on your comments to my daughter in law. Thank you very much for your help
Can’t help you with the thyroid aspect but does your granddaughter know about this group? coeliac.org.uk/home/?&&type...
Also is she aware of the effect being coeliac can have on her bones? It’s worth her finding out what she can do to keep them strong with weight bearing exercise and diet to help prevent osteoporosis.
As Slow Dragon pointed out vitamins should be looked at … Vit D B12 iron folate panel should be checked at least, I also get calcium done my liver & kidney function done and obviously coeliac antibodies and thyroid… I periodically have to supplement due to absorption problems and menstruation can make me iron deficient I’m still having slight problems with Vit D also and supplement and have B12 shots.
As your granddaughter is diagnosed as coeliac she should have an annual review and all the above mentioned should be included if your GP is reluctant to run these ask to be referred back to care of gastroenterologist or a dietitian for deficiencies if not being addressed and act accordingly.
Keep an eye on her tests if you can see there’s a gradual reduction in some areas eg iron you will know even if these are in range and she’s still getting symptoms, she probably needs to be in better range and supplementing but I’d get advice first as once supplementing it will obviously alter test results and Drs will think nothing is wrong.
Coeliac disease also have neurological, fertility, bone problems as well gastrointestinal problems, our spleen can suffer too and they recommend pneumonia jab more often.
I can’t comment re her age and when to test as I was in my 40s when diagnosed but a Dexa scan should be done to know status of her bone density - supposedly ever 5yrs but it’s usually reviewed by a questionnaire 🤦🏻♀️🙄. I’m unsure without reading guidance on this area in someone young.
Unfortunately NHS treatment as you are probably aware is shoddy re thyroid health… and other areas to be honest it’s always seems to be a wait until you get a problem to treat rather than avoiding a problem or finding out root cause/triggers even if genetic… so one way to find out would be doing a full thyroid panel with antibodies and then this area will detect if it’s autoimmune related and they might act but purely going on TSH to say she’s fine is madness, like many of us here are up against.
If this was my grand daughter and couldn’t get treatment after knowing all information and it was obviously this is more than being slightly hypothyroid at the moment I’d look at seeking advice from a nutritionist with thyroid speciality
This may include taking supplements and boosting or an eliminating diet, looking at toxins that trigger and just doing what you can at present, some like viruses are unavoidable unfortunately, all depends on individual needs.
Pippa Campbell has a good nutritionists re thyroid called Claire who has problems herself in these areas you maybe can find basic information on Instagram or Fb, other than that Coeliac U.K. for coeliac related problems but you probably are already aware of that.
Id assume it’s a blip in iron if this has sprung up when she’s hit puberty as with my problems re gynaecology it throws us all out but still needs some guidance and GP should be advising not ignoring if they can’t as out of their hands eg guidelines, they should put you to someone else who can… eg consultant they have more scope to help.
I’m so sorry to hear your granddaughter is feeling so unwell. I have coeliac disease and autoimmune hypothyroidism. I was told my hypothyroidism was ‘sub clinical’ at TSH 5 (although TSH had been noted in my records as abnormal for several years before I was even told - I have learned to ask for copies of all blood tests now). I was feeling dreadful. TSH went to 16 and medichheck blood test showed very elevated thyroid antibodies (both), as well as Vit D insufficiency. I tried Levo - lots of brands - felt worse. I found out that Levo fillers are not coeliac friendly. I ended up on ERFA Thyroid on private prescription and it took over a year to feel ok. The NHS endos were not interested in whether I was coeliac and tolerance for Levo - it was ‘the only option’. This meant my GP would not prescribe ERFA.
I feel for your granddaughter, as she struggles to find a way to feel better. She’s lucky to have you advocating for her.
It may be worth getting a medicheck full thyroid blood test as a starting point to see where all her markets are, including vitamins.
Her b12 numbers are very important with being celiac. It can be a reason for that deficiency. Get the exact number if she is already monitored, do not rely on the doctor's words. Unfortunately they can make a ton of erroneous decisions and statements about b12 deficiency & Pernicious Anemia..Three of their most common misconceptions -
*'Labs are good now, no more shots' 'Oh they're bad again, shots'. Rinse and repeat. No, it does not work that way. Unless one is deficient strictly due to diet, an absorption issue is an absorption issue, it remains - so shots remain.
*A belief that traditional anemia must be present, in tandem. Not true.
*Intrinsic factor antibody test is not faulty, to test for Pernicious Anemia. Wrong. It can leave out almost 50% of positive cases. And many doctors have no clue.
If she already takes b12 pills she might not be absorbing them properly. And the testing might not show the full picture
.
Some concise links, that contain medical footnotes, to make sure your family understands the issue at hand, if she has b12 deficiency.
I was recommended to go to [name edited] on this site and have been on Armour, under her supervision, since August 2022. Was on standard T4, then T3 and T4 until the NHS withdrew T3. So had no option but to go private. And Armour (porcine thyroid) has been a lifesaver. At last I feel normal (except when I forget afternoon dose and feel tired and crave sugar). So would recommend you look into this medication as the quickest way to get your grand daughter back on track and able to concentrate at school. Good luck!
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