My daughter is 17 and is currently undiagnosed. I wrote on here a few days ago about how our NHS GP isn't taking her symptoms seriously and just wants to monitor but it is making her quite poorly.
Here are her blood results over a period of time and the ranges are in brackets. Just wondered if someone could kindly assess them for us.
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Briggsi
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Unfortunately, to get a diagnosis and begin treatment in this country she will need to have 2x TSH results (tested by NHS)above range 3 months apart or one test above 10. That is just the way its determined that anyone needs treatment. They like to be sure as it is a medication for life.
Of course there is a lot of suffering that happens whilst awaiting the magic numbers in blood tests but in the mean time you can be working on low vitamin levels caused by being hypo and the low stomach acid it brings.
Some GP's believe that you have no symptoms until your numbers stray out of range which of course is not correct.
NICE state that a ferritin of 30 or less is deficient. Do point that out to your GP who should be prescribing an iron supplement.
Is she supplementing anything yet? Her B12 appears to have risen.
She should be supplementing ferritin, folate, B12 & D3 which will contribute to feeling a little better. Her low ferritin alone will be causing many symptoms.
Doctors dont get training in nutrition or understand how hypothyroidism, even in the early stages affect our absorption of vitamins.
This group doesn't recommend the use of multivitamins for many reasons. They often contain iodine which shouldnt be taken with Hashi's, they have low amounts of frequently inactive vitamin types.
Better to test key vitamin levels and supplement with high dose quality active type vitamins.
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
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
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.
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
How much gluten was she consuming before she had the blood test? I only ask because I’m currently awaiting a blood test for coeliac disease, but I’ve got another four and a half weeks (minimum) to go before I can have it. Why? Because I was away on holiday for a week and fed up with the way my bowel was behaving (and suspecting gluten as a possible cause) I decided to come off gluten to see if it helped. I had three days which were almost certainly gluten free and three when gluten may have got into my diet in very small amounts (soy sauce, marmite). Actually things did calm down but when I got back I discovered that for coeliac testing you need to have at least one portion of gluten (as in slice of bread, pasta or bowl of cereal) a day for at least six weeks prior to the test or you risk a false negative result even if you are coeliac. I did actually check with CoeliacUK about this (worth doing incidentally) and they did confirm it. I currently have around two portions of gluten a day.
We eat normally so she has lots of gluten either via bread etc. She has had test for coeliac and was negative. She isn't keen on trying gluten free because she likes bread, wraps and pasta. People have also told her gluten free stuff is horrible so no idea but it means a massive change for both of us if we did.
I was only on gluten free for a few days so I can’t comment too much on that and I’m also used to not being able to have things I like due to other digestive issues. That said I do have a friend who is coeliac and she doesn’t find it too bad (bread is the one thing that still isn’t great apparently). I will say that some years ago I had to go gluten free for a month as part of a FODMAP diet and we were so impressed with a type of ginger biscuit we found that we routinely have those now because they are so much better than any other ginger biscuit we’ve tried. Everyone else who has tried them has said the same thing, they are really, really good! So it’s not all awful and things are improving all the time.
I love ginger biscuits….generally try to avoid as they are definitely ultra processed food…..but if we do have them we’ve found M&S to be more gingery than others. I’m not gluten free so, of course, have never tried gluten free ginger biscuits.
Kent&Fraser. They’re not always easy to find (we came across them in a farm shop) so we order them online. We’ve had one or two packets where they either changed the mix or we had a faulty batch, but we’ve been getting them for six plus years now and still love them.
Pity the blood draws weren't all done at the same time of day, because you really cannot compare the TSH levels unless the are. Makes less difference with the FT4 and FT3 but even so, it's best if the blood is always taken at the same time. And best done early morning - before 9 am.
The other thing that’s incredible is the way they view the “normal range” as being absolute. No thought that actually being really rather low (or high) in the “normal range” may warn of a developing problem.
It’s not just hypo - sadly. I had to have faecal samples sent in to rule out possible other causes of the very loose stool problem I’ve been having for a few months now. One of the things they were looking for was calprotectin (a marker of inflammation of the bowel). This was done after I had been off gluten/or on minimal amounts of gluten for a week, so things had improved. The normal range was (I think) 0 - 50ug/g. I came in at 48. That counts as “normal range” of course, so no action has been taken, despite obvious symptoms plus family history ( mother died as a result of colorectal cancer; son came back with a borderline - he was right on the line - positive for coeliac six years ago: he was in the US at the time and has never retested). As it happens I’ve been told to inform my gastro of the possibility of coeliac which I’ve done via secretary (though given I’ve not seen her since January of this year I’m not hopeful that I’ll get to see her any time soon) and of the change in bowel habit. Those tests also checked for H pylori, but came back negative. But you’d think with all that history, plus what else has been happening in recent months (raised TSH) they might think “hmmm - is something going on here?
slightly off topic but yeah they don't understand, yesterday GP was insisting I was over replaced because of TSH, suppressed at 0.01, I said no to reduction and it was suppressed as I was self medicating with T3, she was horrified, wanted to know exactly from where and whom I was sourcing T3. I was horrified as it became glaringly apparent she had no idea what T3 was, I valiantly attempted to educate her, it was a fools errand,
Very, very few of them actually know what T3 is, most of them have never heard of it. Just goes to show what a terrible education they're getting. And, what's worse, they don't have the interest or curiosity to improve their knowledge of one of the most common disease that they have to deal with constantly. They are content to let people suffer and blithely tell them 'it's all in their heads'! They really should be ashamed of themselves.
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and a week later add a separate vitamin B Complex
Then once your daughter’s serum B12 is over 500 (or Active B12 level has reached 70), she 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
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
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
In week before blood test, when she stops vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 until over 500
Post discussing how biotin can affect test results
Hashimoto’s and Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances.
Most common by far is gluten.
Dairy is second most common.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
I am considering a private blood test. As a single parent I have to ensure my money is being used appropriately. If they are purely for my benefit we don't get anything from them because it doesn't seem like anyone else will listen. I am fed up of being asked if I want counselling because I get upset over it. Last night made me mad because doctor put on my daughters notes that I had refused counselling for myself. That was a hard conversation with my daughter.
25 years ago GP refused to refer me to endocrinologist.
He said I had “chosen “ to become bedbound/in wheelchair (with two toddlers at home)
I accepted the referral to psychologist. 6 x 1 hour sessions. Psychologist wrote a glowing report that I was coping with great resilience in face of severe physical illness and that she was dumbfounded I had not been seen yet by endocrinologist
On strength of this report I got my request for referral to endocrinologist of my choice (adrenal/pituitary/thyroid specialist) ….even back then it took another 6-8 months wait to be seen
Oh no sounds awful. At least you got seen but I doubt a counsellor will do that for me to be honest. Other things might come out that I need to keep at bay or I may not cope
Hi Briggsi. I would highly recomend getting a copy if Rachel Hill's book: Be your own thyroid advocate. She is an award winning thyroid patient advocate, who struggled as a teenager/ young adult to get a thyroid diagnosis and effective treatment. She has some great resources on her website also. I hope this provides some usefull information and a positive story for your daughter x
Hi Briggsi, Maybe test her for allergies as something is disrupting her endocrine system. Does she dye her hair or use other medications?
In my experience PPIs are the first thing doctors reach for for digestive issues such as reflux, heartburn etc, if milder forms of medication (eg. Gaviscon Advance) aren’t sufficient to control symptoms. The fact that the cause might be low stomach acid rather than high never seems to occur to them, and to be fair the symptoms for the two are very similar and the only way to tell for sure is 24hr pH monitoring and manometry, both of which will almost certainly require referral to a consultant gastro.
If it is low stomach acid & not high causing the issues, there are ways of helping with that without taking medication (Obviously no one knows 100% that it could be low stomach acid)
I am on the PAS forum here on HealthUnlocked (Pernicious Anemia Society/b12 deficiency). Over the years members have mentioned being successful with things like taking a shot of lime juice before meals; ACV; Betaine HCl plus pepsin.
I am not telling you to switch over to any of these choices, but you might want to come over to that section and discuss dealing with these issues.
Simply because PPIs are a known culprit of causing low absorption of nutrients.
Keep posting to let us know how your daughter is getting on. Always remember that when GP s say ‘within range’ or ‘normal’ it is likely not the same as ‘optimal’.
Sending you very best wishes; you’ve got a lot of information in your two posts so far to look into- it takes time to digest & process new information (& it can be confusing!)
Do keep posting if you need further advice/ clarification. Members are here to help & support each other. 🦋
Sorry to hear this my daughter has just been diagnosed thou I know she has Been not been diagnosed for years as I have hashimotos myself also she has low iron I actually took her Nhs gp results to my private endo he said she’s not on enough thyroxine and has low iron also the gp has not told her this and not put her on a supplement she has had depression on and off and terrible periods ect for years I’m very upset u should not have to go private to get help for any condition I’m on t3 as thyroxine never worked for me and iv had a big battle over the years to get to where I am now I really feel for your daughter and I hope she gets better soon
My daughter (a good student & athlete) was severely fatigued, had trouble functioning & was sleeping 12 hrs or more, when in HS.
The pediatrician sent us to gp/rheumatologist, who did more blood tests - couldn't diagnose & said she was suffering from depression
I asked the pediatrician for a second opinion & she sent us to a pediatric disease specialist. He did more specific blood tests & determined she had severe mycoplasma pneumonia. (She did not have depression,)
It took several months of bed rest & home-tutoring for her to recover.
Yes. If learned that if the dr doesn't order the right blood tests - they frequently like to diagnose "depression". I have seen this happen repeatedly (in USA).
Over here the two favourites for anything the doctors can’t otherwise explain are “stress” and “anxiety”. Unless there’s a temperature involved of course, then it’s “probably a virus”.
Interesting. In the US, docs like to use the MDD diagnosis, instead a just saying, "I don't know- let's call in a consult. My daughter repeatedly told him that she was not depressed. He wanted to send her to a psychiatrist and load her up on antidepressants! Frightening.
The worst. I can still hear my doctors voice all dismissive and skeptical when I showed him my symptom tracker and telling him I would have to involuntarily take naps a few times a week.
“Stop all this tracking…” he said as he waved his hand dismissively. “Get more exercise,” he says. “These should be the best years of your life” he says. Then in my report along the write up he writes “Denies depression.” As if saying it he was saying I had it but deny it.
I am always clear about what feels like “situational depression” - like when you sit and stare at the ceiling for hours too tired to get up or do anything and too much brain fog to think clearly. Who wouldn’t feel sad abiut being so limited. To heck with the knee jerk reaction to prescribe anti-depressants! My t4/t3 was all I needed, imagine that.
So glad you followed your instincts about your thyroid.
With the USA having private-pay medical, affirmative action drs & the now optional Hippocratic oath -our drs make "big bucks", even if "the operation was a success, but the patient died."
Unnecessarily loading patients up on antidepressants & other psychotropics is just criminal.
And yes, (me,too); "Dr. Wrong Diagnosis "wrote on my daughter's chart: "overprotective, difficult parent". 😳
To reiterate what SlowDragon said - do a full iron panel before taking any supplements. Mine ferritin was 30 when I had an iron infusion, so you need to see the complete picture first. Vitamin screening good too.
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