My son is 17. Has Coeliac disease. Tired, dizzy, joint pain are main symptoms and has missed nearly a month of school due to feeling so bad. My brother has underactive thyroid and on meds. I have sub clinical hypothyroidism and have raised thyroglobulin antibodies (501). In 2019 my son had Tsh over reference (5.99) but when they retested it had lowered and they said all fine. I have added a pic of his recent results and his TSH is higher end again. Does anyone think he may have thyroid issues. Please help! Any advice appreciated.
Can anyone please offer advice?: My son is 1... - Thyroid UK
Can anyone please offer advice?
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SlowDragonAdministrator
clearly he is not fine
He needs FULL thyroid including thyroid antibodies and vitamin D, folate, ferritin and B12 levels tested
Vitamin levels should be tested regularly with coeliac anyway
What vitamin supplements is he currently taking
Were both thyroid tests done early morning, ideally just before 9am, only drink water between waking and test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Testing options and includes money off codes for private testing
Blue horizon will test under 18’s
Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/testing/thyro...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/signs-and-sym...
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Thank you so much x
Hi SlowDragonI just checked and he had B12 and Ferritin done these are the results. I will request Vitamin D and folate. Is about 7.30am ok or is 9am best? It’s just getting time off work is difficult. The tests on 26/01 were taken at 14.20.
Bloods
He needs to discuss ferritin result with GP
Ferritin under 30 is deficient
Ferritin under 100 is unusual for a male
is he vegetarian or vegan
Next step he needs full iron panel test …..ideally via GP
Low vitamin levels could be due to being coeliac. Is he absolutely strictly gluten free
Low vitamin levels also directly linked to low thyroid levels as this results in low stomach acid and poor nutrient absorption
Essential to improving low vitamin levels.
Low vitamin levels, especially low ferritin tend to lower TSH ….making it harder to get hypothyroidism diagnosed
cks.nice.org.uk/topics/anae...
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
Medichecks iron panel test
medichecks.com/products/iro...
Look at increasing iron rich foods in diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
List of iron rich foods
Links about iron and ferritin
irondisorders.org/too-littl...
davidg170.sg-host.com/wp-co...
Great in-depth article on low ferritin
oatext.com/iron-deficiency-...
drhedberg.com/ferritin-hypo...
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
healthunlocked.com/thyroidu...
Posts discussing Three Arrows as very effective supplement
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Iron patches
healthunlocked.com/thyroidu...
Thyroid disease is as much about optimising vitamins as thyroid hormones
healthunlocked.com/thyroidu...
restartmed.com/hypothyroidi...
Post discussing just how long it can take to raise low ferritin
healthunlocked.com/thyroidu...
Iron and thyroid link
healthunlocked.com/thyroidu...
Posts discussing why important to do full iron panel test
healthunlocked.com/thyroidu...
Good iron but low ferritin
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Chicken livers if iron is good, but ferritin low
healthunlocked.com/thyroidu...
Shellfish and Mussels are excellent source of iron
healthline.com/nutrition/he...
Iron deficiency without anaemia
healthunlocked.com/thyroidu...
Ferritin over 100 to alleviate symptoms
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Great research article discussing similar…..ferritin over 100 often necessary
ncbi.nlm.nih.gov/pmc/articl...
Low Iron implicated in hypothyroidism
healthunlocked.com/thyroidu...
Inflammation affecting ferritin
healthunlocked.com/thyroidu...
Updated reference ranges for top of ferritin range depending upon age
healthunlocked.com/thyroidu...
Thank you for your incredible patience while you have been awaiting the outcome of our ferritin reference range review. We conducted this with Inuvi lab, which has now changed the reference ranges to the following:
Females 18 ≤ age < 40. 30 to 180
Females 40 ≤ age < 50. 30 to 207
Females 50 ≤ age < 60. 30 to 264
Females Age ≥ 60. 30 to 332
Males 18 ≤ age < 40 30 to 442
Males Age ≥ 40 30 to 518
The lower limits of 30 are by the NICE threshold of <30 for iron deficiency. Our review of Medichecks data has determined the upper limits. This retrospective study used a large dataset of blood test results from 25,425 healthy participants aged 18 to 97 over seven years. This is the most extensive study on ferritin reference ranges, and we hope to achieve journal publication so that these ranges can be applied more widely.
Is about 7.30am ok or is 9am best? It’s just getting time off work is difficult.
The tests on 26/01 were taken at 14.20.
TSH is lowest after lunch
Testing at 7.30am is fine
If doing DIY finger prick test …..make sure to drink plenty water in 24 hours before
But really GP should retest thyroid levels in 6 weeks after improving dire Ferritin and B12 levels
Just book early blood test before work
could you go with him to see GP
get him to tick all symptoms that apply
Symptoms of hypothyroidism
thyroiduk.org/signs-and-sym...
He has coeliac disease (autoimmune)
GP must test thyroid antibodies for autoimmune thyroid disease (hashimoto’s)
And GP should also arrange an ultrasound scan of thyroid
B12
Blood result
B12 is extremely low
He needs further testing for Pernicious Anaemia
Likely to need LOADING B12 injections. That’s several injections over 1-2 weeks before then getting injections every 1-3 months (depending on need)
And needs folate tested
B12 and folate work together
I would imagine he has lots of
Low B12 symptoms
b12deficiency.info/signs-an...
methyl-life.com/blogs/defic...
Do NOT start any B12 or other B vitamins before further testing
If GP doesn’t start B12 injections
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once serum B12 is over 500 (or Active B12 level has reached 70), he may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Highly effective B12 drops
natureprovides.com/products...
Or
B12 sublingual lozenges
uk.iherb.com/pr/jarrow-form...
cytoplan.co.uk/shop-by-prod...
B12 range in U.K. is too wide
Interesting that in this research B12 below 400 is considered inadequate
healthunlocked.com/thyroidu...
Low folate
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)
This can help keep all B vitamins in balance and will help improve B12 levels too
Difference between folate and folic acid
healthline.com/nutrition/fo...
Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.
thyroidpharmacist.com/artic...
B vitamins best taken after breakfast
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose
Post discussing different B complex
healthunlocked.com/thyroidu...
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
In week before blood test, when stop vitamin B complex, he might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
healthunlocked.com/thyroidu...
helvella.blogspot.com/p/hel...
Post discussing start B12 injections
healthunlocked.com/thyroidu...
Again very low B12 will be lowering TSH
Same age as my grandson and I know how things affect them at that age.
Follow Slowdragons advice with getting full testing, especially vitamins as Coeliac can cause deficiencies anyway and that can make you feel pretty rough. Autoimmune conditions are like buses and as he has one, thyroid is very likely with the family history. His results show he clearly needs attention. My guess is he has a combination of deficient thyroid and vitamins that will both need addressing.
Oh dear....he needs help.
TSH is not a reliable marker, he needs a full thyroid test
thyroidpatients.ca/2021/07/...
Follow SlowDragon's advice!⁷
Re symptoms, which are very important...tick his symptoms on the list and use as evidence!
thyroiduk.org/signs-and-sym...
He is not fine so don't let an ignorant medic try to tell you he is!
Good luck.
Welcome, welcome, I would consider getting yourself checked out as well........ I'm not entirely sure your doctors understand the nuances of thyroid dysfunction (to put it politely). Please start reading up -a good book and spend time on here reading others posts and get a really good handle on your family condition so you can advocate for yourself and your son. I landed here 3 years ago feeling very ill and the information I have gleaned here and the books and research papers have enabled me to effectively advocate for myself and avoid being mismanaged by doctors who simply don't get enough training. Some doctors do seem to develop an understanding (but not many). Even then many of them do not understand how to navigate the guidelines and simply prioritise TSH (an indirect measurement) over patient wellbeing and their thyroid hormone status. There is so much support and information here (I'm so lucky to have found it).
Thank you - with regards myself the thing is they just tell me there’s no reason I have high thyroglobulin and it’s not a test GPs use 🤷♀️.
Yea! I was told that. Now 30 years later I’ve paid to have a scan and found I have a thyroid a third of the size it should be (Atrophic Thyroiditis) which is apparently common with TgAb!
Strongly recommend you get yourself FULL thyroid and vitamin testing too
Significant minority of Hashimoto’s patients only have high TG antibodies and yes (currently) NHS won’t diagnose on just high TG antibodies
You may need ultrasound scan too
You have presumably been tested for coeliac?
Thank you so much for everyone’s advice the Dr’s aren’t listening to me - I’m going to keep pushing and take the advice given. Thank you all so much
Thank you x
High Tg antibodies indicate thyroid autoimmune disease/ Hashimoto's but you really need to check TPO antibodies as well.
GPs consider that having Hashi's doesn't alter treatment....it doesn't, but a gluten free diet should help
I hate to add to your misery but in case you don’t know it be aware that there is a link between coeliac disease and osteoporisis - I’m telling you now because no one ever mentioned it to me, at least if you are aware of it you and your boy can work on strengthening his bones while he is young. It’s just one of several osteoporosis markers that most doctors ‘forget’ to mention to you. It might be worth looking at the Royal Osteoporosis Society’s website for information on diet and weight bearing exercise theros.org.uk
Completely agree with slowdragon with regards to your son’s woeful B12 results. Vitamin B12 deficiency can cause awful symptoms, as can an under active thyroid. The brilliant members on the PAS forum on this site will be able to advise on testing protocol for pernicious anemia and B12 deficiency so I’d strongly recommend joining and then posting on there. If he’s got folate test results, include that. Lastly, I would hold off supplementing with B12 for now, much better to wait until *after* tests have been done, to get an accurate picture.
All the best
Please note that tests for "TG Antibodies" and for "TG" i.e. Thyroglobulin are not testing the same thing. Getting TG itself tested is something I can't recall seeing on the forum except for occasional members who come from the USA.
Getting TG antibodies tested does happen in the UK, although doctors here usually only test when cancer is suspected. But people can have positive TG antibodies when they have Hashimoto's Thyroiditis (aka Hashi's). It isn't always related to thyroid cancer.
For more info on thyroid antibodies see this link and click on the plus signs for more info (except where it says "Choose Topic+").
labtestsonline.org.uk/tests...
And for more info on the Thyroglobulin test :
SlowDragonAdministrator
meant to add
Test vitamin D here if GP won’t
via NHS private testing service
Low vitamin D common with coeliac
verywellhealth.com/do-you-k...
also extremely common with autoimmune thyroid disease
NHS Guidelines on dose vitamin D required
ouh.nhs.uk/osteoporosis/use...
GP will often only prescribe to bring vitamin D levels to 50nmol.
Some areas will prescribe to bring levels to 75nmol or even 80nmol
leedsformulary.nhs.uk/docs/...
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
mm.wirral.nhs.uk/document_u...
But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better
Your sons woefully low B12 level may well be linked to his coeliac disease. At such a low level combined with coeliacs unlikely that B12 supplementation via tablets will help. I found myself in a simular position and had to move onto B12 injections plus a good basic b complex with folate. Please ask your GP to test for Intrinsic Factor before starting injections (the blood test for PA) this only picks up 50% so testing negative doesn't mean your son doesn't have PA. Testing positive does. Do go on the B12d.org website and get your son to fill in their symptom checker plus his b12,blood test result.
If your son has neurological symptoms eg numbness, tingling, tremors, blurred vision, coordination difficulties then your GP should not delay starting B12 injections. These should be alternate days until symptoms have e resolved, then a maintenance dose.
Your GP needs to check his iron stores due to his coeliacs.
Is he under a gastroenterologist? Ge really should be with all these deficiencies and coeliacs. Something isn't right.
It's does look like his thyroid is failing too poor love.....which wont be helping matters and an under range ft4 should be a red flag. But many GPs just go on TSH.
I'm not surprised he has been off school poorly with all of this kicking off!
Something to think about . . .
I'm so sorry to hear that he (and you) are having to go through this.
You've had a lot of responses from people more informed from me....but here's my take based on my own experience. I have coeliac disease which kicked off in my twenties (I'm now 67) though it may have been present for longer, and was undiagnosed for 20+ years.
I was also diagnosed as hypothyroid in my mid thirties while still undiagnosed coeliac. That in itself turned into a hot mess because I don't metabolize Levothyroxine well, which wasn't recognised until I was in my 50s. I deeply regret getting on Levo and have always wondered how much of that had to do with my undiagnosed coeliac status. I now suffer from Atrial Fibrillation and am diagnosed with osteoporosis, potentially connected to being over replaced with levothyroxine (and Synthroid while living in the US) as I remained symptomatic - due, I know now, because I don't convert well. Though of course the osteo could also be a result of coeliac disease.
SO, all of this is to say if I was in your shoes I would be doing everything to get your sons vitamin and mineral deficiencies sorted before I started going down the road of thyroid issues. Once he gets on that road he is not getting off it, and once he starts taking thyroid hormones his thyroid function is going to decrease. I really, really wish I had understood this way back when I started on that course of action. Of course, at the time I was desperate to do anything to feel better and the idea that taking a pill is going to achieve that is very appealing. At the time the acupuncturist/naturapath that I was working with begged me not to start taking thyroid hormone and I really wish I'd listened to her.
Of course, your son is not me and his situation is probably different. I'm just suggesting that you start with the other stuff and see how he does. Unless he's been on a 100% GF diet for a good while he may well still be suffering the 'back log' of poor absorbtion of vitamins & minerals.
How long since he was diagnosed as coeliac? Is he 100% compliant with a totally GF diet including paying very close attention to cross contamination - which is much more difficult to manage, in my opinion, than actually cutting out gluten. Do you have gluten in your kitchen? If so, does he use the same butter/margarine, jam etc. as everyone else? Does he eat food prepared anywhere else? You're probably very aware of all this, so please excuse me if you are, but for example, the daughter of some friends of mine was diagnosed coeliac and they hadn't even thought about the fact that they used the same toaster for her GF bread and their non GF. Again, I'm sure you're aware of this but it can take 3 months for the body to repair the damage done from one exposure. And all of the symptoms you describe are the symptoms I've experienced when exposed to gluten. I also got a lot of relief from body aches when I substantially upped my Vitamin D levels.
I really hope that you're able to make headway with your son's ill health. I know from my own experiences how hard it can be when nothing seems to be helping.
Helen
I have coeliac disease and Hashimoto’s
He needs to know and get the thyroid antibodies checked out, as he could be heading for thyroid problems…our antibodies are causing problems usually way before the tests NHS thyroid tests show and if he’s got one autoimmune he has higher chances of another, and your GPs should know this although treatment for hypo/Hashimotos to NHS is no different.
We know there’s lots of things like getting our nutrition in better place and possibly more dietary changes and avoiding triggers via diet and lifestyle can all help lower antibodies to ward off and control the condition…our iron folate vid D calcium etc all need to be in a good place.
But firstly do you know if he’s adhering to proper gf diet as coeliac disease can cause neurological issues, not just digestive it also can causes skin problems …was his last coeliac check up still classed as negative? He should if not having already, have yearly bloods done and calcium and Vit D iron B12 folate etc as we do suffer varying degrees of nutritional deficiencies which often need addressing… My B12 caused neurological problems and I have pernicious anemia and now on B12 injections that’s something to check too.
Your GP probably won’t do anything until his TSH levels are much worse 🤦🏻♀️ but if you know his antibodies are higher than normal you might ward off full blown thyroid problem’s for the future or no worse, if you can address the cause which for me was gluten and my antibodies are reducing extremely slowly 🙄 unfortunately some genes once switched on it might be uphill struggle to manage.
Hi anniemac, coeliac disease? It makes you feel all of these and worse, poor chap! Just ensure he has no hidden gluten by accident in his diet. If he's accidentally put it in all the symptoms will start to come back. As for thyroid I wasn't aware you could have both conditions together or are you checking and worried because he may have more problems than you think. Ask your doctors to re-test if you're really worried. Good luck!
“As for thyroid I wasn't aware you could have both conditions together”
Of course you can! Where on earth have you got that idea from?
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