18 Year Old Newly Diagnosed - Urgent Help Pleas... - Thyroid UK

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18 Year Old Newly Diagnosed - Urgent Help Please :(

Hi

Excuse me if this turns into an essay but I am desperate for some help.

My daughter (18 a month ago) has been struggling more and more over the last year and I finally managed to convince her to go to the doctors after having to take a week off sick after October half term. (At first the doctor said "we're all tired and it that's 21st century life" (I didn't punch him, wish I had) but I got him to do blood tests - which was all I expected.

We weren't called about the results, just a routine letter and when we booked to go the doctor was on holiday for 2 weeks. I tried (in vain) to get a copy of the results or find out from the surgery whether it was urgent that she see another doctor or should she wait until the original doctor returned from holiday. No-one could tell me and what with GDPR they would not let me have anything despite her signing all the forms that they had.

So.…. last Monday (original blood test 6th November) she went to the doctors (on her own for the first time as we were pretty convinced he as going to say that there was nothing on the blood tests) she must have had the quickest appointment in the world but came out happily saying she had low thyroid and she was going to be on medication for life!!! (That's not routine in my book!!).

Since the appointment there has been no improvement and after a bit of googling is seems that it can take months to get her "levels" right. It seems at the moment that she is actually getting more and more exhausted; if she has a full day at school she almost needs a day off afterwards, I can hardly get her out of bed in the morning and a 9am lesson is appearing out of the question. At my wits end I thought that instead of turning to the internet I would phone the doctor for advice (what a waste of time that was!) Apart from insisting in speaking only in "general terms" because she's 18 he basically refused to see her until the 6 weeks are up and she has been tested again. He has started her on 75mg of Levothyroxine a day.

Today, armed with a signed request from her, I got a print out of her blood test results (as everyone here seems to know their levels of everything!) and am asking you for advice:

Ferritin - 26ug/l (range - 13-150) seems on the low side

Folate - 8ug/l (range 3.8 - 9999) also on the low side

Vitamin B12 - 287 ng/L (range 197-771) maybe lowish?

Vitamin D3 - 97 nmol/L

Vitamin D2 - <5 nmol/L (states that <30 means deficiency - this is stupidly deficient and the dr did not bring it up with my daughter AT ALL!!) Says it should be >50!!!

Serum free T4 - 10.7 pmol/L (range 10.5-24.5)

TSH Level - 18.49 (range 0.27-4.2)

SOOOOOO.... what do I need to go back to the doctor to ask for - apart from why the F*** he didn't raise the issue of the low Vitamin D? I will make an appointment to go with her to the doctors tomorrow but would really like to go armed with the right questions. I am also deciding whether to make an official complaint as his attitude stinks!

I have some over 50 vitamin D3 (2000iu) at home - but it is the D2 that is vastly deficient.

I am really out of my depth with this one - if you could offer any advice I would be most grateful.

Thank you so so much.

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StrugglingMum

First of all, I'll clear this one up for you :) :

Vitamin D3 - 97 nmol/L

Vitamin D2 - <5 nmol/L (states that <30 means deficiency - this is stupidly deficient and the dr did not bring it up with my daughter AT ALL!!) Says it should be >50!!!

SOOOOOO.... what do I need to go back to the doctor to ask for - apart from why the F*** he didn't raise the issue of the low Vitamin D?

D2 and D3 are added together to give Total Vit D and it's the total level that is important. D2 is always a very low figure, D3 is the higher figure. Research has shown that D2 is not as effective as D3 at raising blood levels of Vit D, which is why D3 is the supplement usually taken, although D2 can be given to vegans/vegetarians as D3 comes from animals and D2 comes from plants.

So we are looking at 97ish for her Total D3 (we don't have a proper number for her D2).

The Vit D Council recommends a level of 125nmol/L and the Vit D Society recommends a level between 100-150nmol/L so her Vit D level is actually not too bad at all.

It might be a good idea to take a D3 supplement during the winter as we can't make any naturally during this time, so something like 1000-2000iu D3 daily along with it's important cofactors Vit K2-MK7 and magnesium could be enough.

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.

Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds

naturalnews.com/046401_magn...

Check out the other cofactors too (some of which can be obtained from food).

I'll reply about the other results in a new message.

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Thank you SeasideSusie - that's really helpful - I will start her on the D3 that we have and I also have magnesium (I researched this a lot last year so have quite a good one I think!) but didn't know about the K2 so will look into that.

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StrugglingMum

The doctor is treating your daughter correctly and according to protocol. She's been started on a reasonable dose of Levo at 75mcg. Protocol is that retesting is done 6 weeks after starting Levo, with a 25mcg increase when results are back where necessary (usual in new patients), then retesting/increase of 25mcg every 6 weeks until levels are where they need to be for the patient to feel well and symptoms abate. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo if that is where you feel well.

Levothyroxine is not a medication as such, it is a hormone - thyroid replacement hormone which is needed to replace the hormone the body is no longer producing itself.

It's quite normal for it to take a while to feel improvement, sometimes it takes months. Sometimes a patient feels better for a couple of weeks after an increase then starts to feel unwell again, this is because they need an increase, they are still titrating and not yet on their optimal dose.

So patience is needed I'm afraid but we do have some tips for patients:

Take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, etc, for an hour either side as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours.

When booking thyroid tests, always book the very first appointment of the morning and fast overnight (water allowed) . This gives the highest possible TSH which is needed when looking for a diagnosis, an increase in dose or to avoid a reduction. TSH is highest early morning and lowers throughout the day. It can also lower after eating and coffee also affects TSH. Also, take your Levo after the blood draw because if you take it before then your FT4 will reflect this and show higher than what is normally circulating. We usually advise 24 hours between last dose of Levo and blood draw so if you take your Levo in the morning then delay until after the test, or if you take it at night then delay that dose until after the test. These are patient to patient tips which we don't discuss with doctors or phlebotomists.

As for her other nutrient levels:

Ferritin - 26ug/l (range - 13-150) seems on the low side

Yes this is low. For thyroid hormone to work (that's our own as well as replacement hormone) it's said that ferritin needs to be at least 70, preferably half way through range.

It might be an idea to ask for a full blood count and iron panel to see if there is iron deficiency anaemia.

You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

Vitamin B12 - 287 ng/L (range 197-771) maybe lowish?

This serum B12 test tests the total B12 - inactive and active B12. Active B12 is about 10-30% of the total, so we can have a "normal" serum B12 result but still have B12 deficiency.

I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:

"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."

So she can check for signs and symptoms of B12 deficiency here

b12deficiency.info/signs-an...

If she has any then they should be listed to discuss with her GP and further testing for B12 deficiency/pernicious anaemia requested.

Folate - 8ug/l (range 3.8 - 9999) also on the low side

The GP will say this is in range, which of course it is. That top of range figure is ridiculous, it's not a proper range at all, and we can say her folate is on the low side. She could eat lots of folate rich foods and maybe take a B Complex containing methylfolate rather than folic acid (eg Thorne Basic B or Igennus Super B). However, if she has signs of B12 deficiency then she mustn't start a B Complex before further testing has been carried out and any B12 supplement/injections commenced, this is because folate/folic acid masks signs of B12 deficiency.

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Invaluable information. You really know your stuff.

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The fact that few doctors don't know very much at all - except the TSH (thyroid stimulating hormone) - I had to diagnose myself but by that time I was so very unwell and I had known no one who was hypo. One person I did meet was very positive that I'd soon feel well but, for me, that wasn't the case. However your daughter may find it works perfectly for her (levothyroxine). As long as her dose is increased every six weeks until TSH is 1 or lower and Free T4 and Free T3 (rarely tested) hopefully she'll improve reasonably quickly.

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Hi Shaws - how do I get her T3 tested? Do I need to ask the doctor for an enhanced test?

Strangely my daughter is very short 5'4" compared to the rest of the family, has had a terrible time with her periods and has had seriously worsening fatigue over the last year. She is 18 and is obviously trying to do the things that 18 year olds do (staying out until stupid O'clock every so often) but she is now paying a seriously hefty price if she does and is just so fed up with being tired all the time. She says she wakes up needing a 20 minute nap - it's not how you should be at this age!!

Sadly I think this shows that she has been struggling with this since she was about 12.

Her diet is also terrible - she just wants to eat crap all the time - which is probably her body desperately trying to find energy.

It's all a bit heartbreaking as a Mum :(

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You can get a private blood test and I'll give you a link. The labs do home pin-prick tests so make sure she's well hydrated a couple of days before blood draw.

We have several labs and Medichecks does an 'offer of some sort' every Wednesday. Blue Horizon and Thriva are the other labs.

thyroiduk.org/tuk/testing/p...

A Full Thyroid Blood test is:-

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

Put the new results on a New Post with the ranges. Ranges are important to enable members to comment upon them.

You can also put up a post to ask members how they managed to draw their blood with a private test.

An 18 year old should be full of vitality and happy. Having undiagnosed hypo just makes one feel awful. The problem too, in the UK, they make you wait until TSH is 10, whereas in other countries if it is above 3+ you will get a prescription.

I, myself was undiagnosed. I was given 'this - that - and even went under anaesthetic and then told 'on coming round' I didn't have that problem. What is it then? I asked and got no response. They didn't return my money.

Even discharged from the A&E after an overnight stay as 'probably viral with high cholesterol '- one day before I got my own blood test. This coincided with a blood test I demanded from the surgery. High cholesterol - in the past when symptoms were known by all doctors - should have been a 'red flag. In fact my own blood test showed a TSH of 100 and GP phoned to say who gave you the blood test form, I said I did. So faith has gone with regard to doctors knowing much about any symptoms.

thyroiduk.org/tuk/about_the...

If daughter gets a private test, she should be well-hydrated a couple of days before blood draw.

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Thank you again! That's really helpful - so should I get my daughter to write to the doctor (write a letter myself and get her to sign it!) requesting to have a full blood count (she did have a full blood count but it did not seem to include iron which is weird), including iron. And what sort of B12 test would she need to have? (The signs she has would be fatigue, lack of concentration/memory and she is in pain (aches all over) in the evenings where she is so tired).

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I don't know if writing a letter is helpful, there's no saying that the doctor will have read it but at least it would be on her record that she has requested it.

The iron panel isn't included in a full blood count.

An iron panel should include:

Serum iron

Total iron binding capacity (TIBC)

Transferrin saturation

Serum ferritin test

I think the NHS only does serum B12 but not absolutely sure, you can ask about Active B12 but there are other tests for B12 deficiency and pernicious anaemia - if necessary ask about Homocysteine, Methylmalonic Acid, Intrinsic Factor Antibody.

If I were you, and if your daughter doesn't mind, I would go along to her appointment with her. It's surprising how different a doctor can treat a patient when there is a "witness". If she forgets anything you can bring the matter up, you could take notes so that she doesn't forget anything, etc.

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Maybe I will wait until January - and then request better tests when they test again 6 weeks later. Seems such a long time to wait though when she is struggling.

Thank you so much for your help.

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Hello strugglingmum, sorry you are having to deal with this. There are lots of fantastic people on this site who will give you expert advice. But just to say that your daughter’s TSH reading places her firmly in the hypothyroid range and sh will need medication with a hormone replacement called levothyroxine from now on. The dose will be increased every six or so weeks until her symptoms are reduced and her TSH reading is somewhere under 1. It might take weeks or even months to get her back to feeling healthy so you might need to be patient but persistent. When I was first Ill and very confused. I found it helpful to regularly read this site to learn about my condition from some of the wise people you’ll find here and I also read some basic books including:

The BMA guide to thyroid disorders by Dr Toft

And

Living well with hypothyroidism by Mary Shomon.

I’m still only partly recovered a year after starting medication but for many people the medication brings very effective symptom relief.

Keep advocating for your daughter, ensure she gets six week testing and dose increases until the TSH is down. And persist if her symptoms don’t resolve or she has other problems like low vitamin levels or persistent unresolved symptoms.

Good luck, I’m sure others here will give you more detailed advice.

Michael

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Thank you Michael - I promise not to put the Thyroid book on her Christmas present list - she's also dyslexic so there's no chance that she would read it! I will order it and read it before I go back to the annoying doctor.

It's just heartbreaking that everyone thinks this condition is OK to have because you "only" have to take a pill every day for the rest of your life.... but it seems the reality is months and months of trying to get the levels right and having to learn more than the doctors. (Don't get me started on doctors... bloody useless if you have anything more complicated than an infection!)

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Thank you reallyfedup123 (sorry that you are really fed up though :( )

She's been started on 75mcg of Levothyroxine but I just wonder whether I should ask for more detailed blood tests for January?

I am not sure which blood test gives me T3?

I said to SeasideSusie that I can start her on the Vitamin D & Magnesium but I am a bit confused about what to do about the Ferratin, Folate, B12.... More research is needed I think.

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Thank you - I am struggling with getting her to eat much more than pesto pasta at the moment - her diet seems to have changed so drastically over the last year. She used to eat everything but now hates most things; I think someone said she needed to have the blood tests for B12 before she starts supplements just to see if she is truly deficient. All a bit overwhelming and confusing....

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Ah ha!! I can do oranges, kiwi, red pepper!! 🙌🏼💪🏼💪🏼💪🏼

Are you gluten free too? Is that the only way?

Will do a big chilli tonight (incase you were interested 😂😂😂) as that’s one of the few things that gets a thumbs up 👍🏼

Thanks so much for the support.

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Just a quick comment! Sadly nothing acts quickly in the Thyroid world I'm affraid so pstirnce is needed. It takes a full six weeks to get each new dose fully into the body so that is why we tast every 6-8 weeks until we are on our correct dose. So useful info about and more if you look on the Thyroid UK site. They run this forum. Get your daughter to ask for a copy of any blood tests, useful to annotate with other info at that time and useful to look back on as well particularly if you add any symptoms as well. They isza full list of symptoms on the site so worth a look as she may have problems that are thyroid related but not realised. Always remember help is just a question away and if we are all asleep then usecthe search facility to reach older postings.

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Thank you so much - it's really great having this community for advice and as a sounding board.

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Strongly suggest to read - You Can Fix Your Brain by Dr Tom O Bryan - it’s excellent. In depth about autoimmune - causes and ‘cures’. It will make it a whole lot clearer and gives you a path to follow to wellness.

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Dear Struggling mum

So sorry for you. It’s a shock but you will sort it I’m sure.

I read your post to see if this was hereditary - I have 15 year old who eats all the wrong stuff and was recently diagnosed with low ferritin I have Hashimotos and am keeping an eagle eye on her in case she develops it.

My mum had it - undiagnosed but I recognize all her health ailments in me, so am super sure I don’t want to end up with what she had.

If I was you I would read up about functional medicine and start working on your daughters diet. Look into all vitamin and mineral deficiencies, food intolerances, sleep, environmental toxins etc.

The three things that come into play to trigger thyroid autoimmune probs are 1 heredity 2 environmental toxins 3 food -the GPS are out of their depth with simply sorting out key vitamin deficiencies as you have seen. Wishing you super good luck. Keep positive. Xx

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Thank you - her Aunt on her Dad's side has low thyroid so could be inherited - she is gluten free veganish. we thought she was just fussy and annoying but it looks as if our daughter may have to go the same way!

I do tend to cook mostly from scratch - but out of all the family she is the one who loves crap & "brown" food...

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I'd want Vit B12 to be above 500.

Re Vit D:-

grassrootshealth.net/wp-con...

And here's the FAQ from same website:-

"Why does GrassrootsHealth recommend having 40-60 ng/ml (100-150 nmol) of vitamin D (25 OH D) as opposed to 50 ng/ml (125 nmol) or 60 ng/ml (150 nmol) being the lower limit on some of the other vitamin D web sites?"

"GrassrootsHealth has gathered a group of 40 researchers/practitioners who AGREE that at least 40-60 ng/ml (100-150 nmol) is necessary. The key to our public health effort is to have a consistent message, and all 40 members agree that 40 ng/ml (100 nmol) is the minimum. There are, as you note, people who think it should be higher. Getting everyone to at least 40 ng/ml (100 nmol) is still a major achievement, however! This would solve many of today’s world-wide health problems."

NB: NG x 2.5 = NMOL.

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I have started her on 50 micrograms (2000iu) per day of D3 (we had some!) - will look into the B12 (any supplement seems to need a lot of research to ensure you get the right one!)

Thanks for your help :)

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