Hypo advice please for my daughter: I would... - Thyroid UK

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Hypo advice please for my daughter

dizzy864 profile image
23 Replies

I would really appreciate some help with my daughter's thyroid evaluation bloods done with medi checks. Results as of 29/7/20

TSH 2.95 ( 0.27 - 4.2 )

Free T3 4.63 ( 3.1 - 6.8 )

Free T4 14.4 ( 12 - 22 )

Thyroglobulin anti bodies 10.4 ( <115 )

Thyroid Peroxidase anti bodies <9 ( <34 )

Ferritin 93.3 ( 13 - 150 )

Serum Folate 1.32 ( > 3.89 )

Vitamin B12 39 ( > 37.5 )

Vitamin D 109 ( 50 - 75 )

CRP HS 5.52 ( < 5 )

My daughter is 36 years old. She has been unwell for about four years. She's gained 4 to 5 stone. She used to be a size 8 and very active. She did three or four gym classes a week plus jogging and cycling. Thats all stopped. She had horrendous monthlys - very long and very heavy. Her GP put her on the kind of pill that completely stops monthlys. This, I think has caused her huge, protruding tummy! She saw her gp just before lock down. TSH was tested and "normal". He told her , " join a gym and go on a diet." She is really tired and depressed. She lives alone and works long hours as a secondary school teacher. She has no life out of school. She has an afternoon nap when she can and goes to bed early and lays in in the mornings. Such a change from four years ago!

She is worse every time we see her. She refused to come with us to Germany this year saying she was too tired. It's been a regular thing for several years.

She said her CRP HS is high due to severe urticaria. Three years ago she had many visits to A and E due to facial swelling. She is currently on an experimental injection for this. She has five monthly injections plus anti histamin tablets prescribed. The sixth month she's not allowed the injection but has double anti histamins. And she basically really suffers for the month. She was told the urticaria was probably auto immune. No further investigation.

She has no other medications. She's been supplementing Vit D for a couple of years since diagnosed deficient.

Her symptoms are a lot like mine before I was diagnosed hypo. It took over three years for me to be diagnosed as I need thyroid levels to be at the top of range. Am I right in thinking she should be on levo? She's no chance of any help from her gp. She obviously needs to suppliment B12.

Any help or advice would really be appreciated.

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23 Replies
Macey2009 profile image
Macey2009

Sorry you've had no replies. It may have been missed. You could maybe try posting again ☺

SeasideSusie profile image
SeasideSusieRemembering

dizzy864

Sorry your post was missed yesterday.

First of all there is a very big problem here:

Serum Folate 1.32 ( > 3.89 )

This is folate deficiency, no doubt about that, she should discuss this result with her GP. See

cks.nice.org.uk/anaemia-b12...

Folate level

◦Serum folate of less than 7 nanomol/L (3 micrograms/L) is used as a guide to indicate folate deficiency.

◦However, there is an indeterminate zone with folate levels of 7–10 nanomol/L (3–4.5 micrograms/L), so low folate should be interpreted as suggestive of deficiency and not diagnostic.

The GP can't argue that she's in the indeterminate zone, she needs treatment for folate deficiency.

Vitamin B12 39 ( > 37.5 )

Active B12 below 70 suggests testing for B12 deficiency according to Viapath at St Thomas' Hospital:

viapath.co.uk/our-tests/act...

Reference range:>70. *Between 25-70 referred for MMA

There is a link at the bottom of the page to print off the pdf to show your GP.

Get her to check for signs of B12 deficiency here (I would be very surprised if she doesn't have any):

b12deficiency.info/signs-an...

b12d.org/submit/document?id=46

If she does then she should list them to discuss with her GP and ask for testing for B12 deficiency and Pernicious Anaemia. She should not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results.

Her result is dire and I'd be very surprised if she doesn't need B12 injections (which are usually for life).

I would also suggest that you/she check out the first video on this page (you don't necessarily have to watch all of it), it will explain the importance of getting B12 investigated:

b12deficiency.info/films/

Ferritin and Vit D are OK although I prefer my Vit D at the top end of the range suggested by the Vit D Council/Vit D Society which is 100-150nmol/L. As she's supplementing with Vit D, does she also take it's important co-factors - magnesium and Vit K2-MK7?

TSH 2.95 ( 0.27 - 4.2 )

Free T3 4.63 ( 3.1 - 6.8 )

Free T4 14.4 ( 12 - 22 )

These results are classed as euthyroid because they're within range. However, a normal healthy person would have TSH no higher than 2, often nearer 1, with FT4 mid-range-ish. Her TSH is a little higher than one would expect and close to the level where some countries diagnose hypothyroidism (TSH of 3), and her Free T4 is only 24% through range.

Antibodies are low so don't currently suggest autoimmune thyroid disease, but one negative doesn't rule it out.

Was this test done no later than 9am with nothing to eat or drink except water before the blood draw, this gives the highest possible TSH which is needed for diagnosis.

dizzy864 profile image
dizzy864 in reply toSeasideSusie

Hi, Thanks a lot for your reply.

My daughter did a blood draw herself before 9.00 etc as she should but there was a "sample error" with most of the results. She was then told she had to go to a clinic and have the blood taken. The earliest appointment the clinic does is 10.30 am so she had the first appointment. Blood was taken on an empty stomach - just water before.

I don't know about the accuracy of the first tests that they did from her sample but they did vary quite a lot from those taken a couple of weeks later.

TSH 1.61 later 2.95 ( 0.27 - 4.2 )

Free T3 4.2 later 4.63 ( 3.1 - 6.8 )

Free T4 15.6 later 14.4 ( 12 - 22 )

Active B12 50.4 later 39 ( > 37.5 )

CRP HS 10.2 later 5.52 ( < 5 )

Other things were not tested and marked, "sample error". Do thyroid results usually vary that much in less than a couple of weeks? She's not taking any thyroid meds.

She does not have PCOS. Six years ago, she had an ovary removed. She's had been unwell for some time. She was found to have cancerous cells in one ovary and was told to have it removed. At the time, we were told it was not cancer just cancerous cells - although we don't understand the difference. Since then she has had regular check ups in that area.

One of my symptoms prior to being diagnosed hypo was horrendous monthlys, which is why I had been thinking hypo for some time.

I'll tell her to see her gp re B12 and folate deficiencies.

Karenk13 profile image
Karenk13

Has she been checked for PCOS ? This could definitely be a possibility just putting her on the pill is not the solution to why she is having those period issues and it also wont resolve it. Also she should be checked for Endometriosis and have her hormone levels checked .

PCOS or the pill or both could also contribute to weight gain and alot of the other symptoms if the doctor hasn't checked these things yet I would definitely suggest she asks.

dizzy864 profile image
dizzy864 in reply toKarenk13

Hi, Thank you so much for replying. She is regularly checked for gynocological issues and nothing has shown up. I am very opposed to her being on this kind of pill. It was given to her to treat her symptoms without a proper investigation of the cause. Her gp won't accept she has anything wrong with her that diet and exercise won't cure.

SlowDragon profile image
SlowDragonAdministrator

With B12 and folate that low she needs full testing for Pernicious Anaemia before starting any B vitamins

Has that happened?

Ask for ultrasound scan of thyroid too

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

dizzy864 profile image
dizzy864 in reply toSlowDragon

Hi, Thank you so much for replying. My daughter has had no tests or investigations as her gp is convinced she just needs to diet and excercise to cure everything!! At least he hasn't put her on HRT ( which happened to me! ) or anti depressants.

I'll ask her if she can change surgeries, if not have another go at her gp for further testing.

SlowDragon profile image
SlowDragonAdministrator in reply todizzy864

Can you go with her to appointment....just as witness....you don’t have to say anything...(though as you had similar experience...you may wish too ...might be best keep silent at this stage other than to say you have autoimmune thyroid disease)

SlowDragon profile image
SlowDragonAdministrator in reply todizzy864

Is she vegetarian or vegan?

Obviously this is common reason for low B12

Does she eat plenty of green vegetables?

You can get private ultrasound scan if need be

I have info on private London scan options

dizzy864 profile image
dizzy864 in reply toSlowDragon

Hi, yes she's always been vegetarian. She has always had a very healthy diet with lots of veg and some fruit. Is a private ultra scan very expensive? Can you pm me details of the London scan option please. My daughter lives near Heathrow.

SlowDragon profile image
SlowDragonAdministrator in reply todizzy864

Well now wonder she has dire B12

Has she ever been supplementing B12?

As a vegetarian she should always have been supplementing B12 daily

academic.oup.com/nutritionr...

The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3

Her folate is really terrible.

Does she eat any green vegetables?

Low vitamins could obviously still be linked to being hypothyroid...we see thousands of Vegetarian Or vegan Hashimoto’s patients on here ....it’s much harder to maintain optimal vitamin levels.

Does she eat an dairy, or any fish?

dizzy864 profile image
dizzy864 in reply toSlowDragon

Hi, thanks again for your reply. She is a true vegetarian so if it ever lived or breathed, she won't eat it. She does eat a lot of cheese and some milk and yoghurt.

I've been nagging her for over three years to take a B complex pill. I even bought her a packet one Christmas. She did not take them. I don't understand why not. I hope she will now. She does have a healthy vegetarian diet with lots of veg and some fruit. She's always been convinced that's enough. I know she's wrong.

SlowDragon profile image
SlowDragonAdministrator in reply todizzy864

Her B12 could be low enough to be causing permanent neurological damage

A vegetarian diet has little or no B12 in it

B12 deficiency is serious condition

More in-depth testing including homocysteine and MMA

nutris.viapath.co.uk/pages/...

SlowDragon profile image
SlowDragonAdministrator in reply todizzy864

Watch some of these films

b12deficiency.info/films/

Also see symptom list on same website

b12deficiency.info/signs-an...

SlowDragon profile image
SlowDragonAdministrator

Urticaria can be linked to Hashimoto’s

verywellhealth.com/thyroid-...

thyroidpharmacist.com/artic...

humanbean profile image
humanbean

What kind of diet does your daughter eat?

If she wants a healthy diet that is nutrient-dense then I would recommend this website :

dietdoctor.com/

...

Hives (urticaria) can be caused by the body building up too much histamine. Rather than taking anti-histamines in high doses it might be more helpful to reduce the histamine levels in the diet to see if it helps.

healthline.com/health/hista...

histamineintolerance.org.uk/

selfhacked.com/blog/foods-h...

factvsfitness.com/histamine...

...

This next point is based on a vague memory, so take it with a pinch of salt...

I've heard of hives being caused by protein deficiency. The best source of complete proteins is animal foods - meat, fish, animal milk products.

...

Vitamin B12 doesn't exist naturally in vegetable and grain products, it only exists naturally in animal-sourced products. Your daughter's dreadful vitamin B12 and folate levels are bound to be causing lots and lots of symptoms, possibly including the hives.

You'd need to read the PA Society forum

healthunlocked.com/pasoc

to find a source of B12 injections if your daughter's doctor won't pull his finger out and treat her urgently. If the doctor is useless then injections must be sourced from Europe because they aren't available without prescription in the UK. In Europe though there are several countries where injectable B12 can be bought without prescription and it is legal to import them. (It's only a vitamin after all - and it isn't poisonous!)

Please be aware that there is some suggestion that taking folate while B12 is catastrophically low is not a good idea - at least not immediately - you would only need to delay by two or three days after having a couple of injections of B12 before starting to supplement high dose folate.

Folate is needed by the body to make use of the vitamin B12 it has.

Of all the problems your daughter has the low B12 and folate are the most urgent.

This link should be of interest :

chriskresser.com/folate-vs-...

Please note that high dose methylfolate can be easily bought on sites like Amazon.

Look for references to Methylfolate, 5-MTHF, or Metafolin to find a suitable supplement, and read the reviews. Your daughter will need 5000mcg per day for a while, with a re-test in a few weeks to see how well she is absorbing it.

There is no point at all in re-testing vitamin B12 levels once your daughter starts injecting it - it is likely to be high. If anyone ever tells your daughter that high B12 is poisonous or dangerous in any way, then this article (from a Dutch site, but in English) should help :

stichtingb12tekort.nl/weten...

There are other useful articles in English on the same site :

stichtingb12tekort.nl/weten...

dizzy864 profile image
dizzy864 in reply tohumanbean

Hi, Thanks for all the info. My daughter has always been a vegetarian. I tried the keto diet a couple of years ago. It's not sustainable for a vegetarian. It's just too boring. My daughter, like me would never consider not being a vegetarian. I've emailed her and stressed the importance of sorting these deficiencies out. I'm seeing her on Sunday so I'll be able to make sure she's dealing with this.

humanbean profile image
humanbean in reply todizzy864

If your daughter wants to remain a vegetarian then that's fine but she has to accept that she will almost certainly have to take supplements permanently. People can't live without vitamin B12 and folate - it just isn't possible. The same comment applies to any other low nutrients she has.

Another issue is that if your daughter does end up developing hypothyroidism then she will find it harder than ever to absorb nutrients from her food since one of the commonest symptoms of hypothyroidism is low stomach acid.

dizzy864 profile image
dizzy864 in reply tohumanbean

Hi, Thanks for your reply. Unfortunately, you're preaching to the already converted. I take so many suppliments that I rattle! I've been telling all of my children to suppliment for years. My youngest child went from vegetarian to vegan almost three years ago. I did persuade him to buy yeast flakes with B12 today! They all refuse to suppliment. My daughter has been taking vit D since being diagnosed deficient a couple of years ago but that's it. I've been nagging her every time I see her to take B12. I even bought her some for Christmas. She didn't take them!! As my "baby" is 32 years old, there's not anything I can do.

dizzy864 profile image
dizzy864

Hi, I did know that, I read an article, I think on this site a couple of months ago. It's wonderful what I have learnt here from all the helpful people.

Unfortunately her gp doesn't!! She did try to tell him that her urticaria could be hypo thyroid but he disagreed and wouldn't listen.

humanbean profile image
humanbean in reply todizzy864

You have to click on the Reply button of the post you are replying too, otherwise you are just replying to yourself.

Does your daughter read these replies you're getting? If she doesn't then she really ought to because she really needs to do something urgently about her catastrophically low B12 and folate. It's far more important than any issues with her thyroid right now.

dizzy864 profile image
dizzy864 in reply tohumanbean

Hi,

Thanks for your reply. Unfortunately, my daughter has been in denial for years about having a thyroid problem. I've been telling her since her for the past three or four years that her symptoms are thyroid related as they are so close to my own symptoms prior to diagnoses. She has spoken to her gp a couple of times and he's been very definite that it is not thyroid. It's only recently that she's accepted the possibility. The only reason she agreed to testing is that I paid for it!!

I have emailed her and told her to see her gp immediately about her two deficiencies. I've also told her to try to get a thyroid scan. I think that is very unlikely to happen - my gp flatly refused my request.

I have suggested that she join this site but she's always refused as she did not believe she had a thyroid problem. Hopefully she will join soon.

humanbean profile image
humanbean in reply todizzy864

Her B12 and folate problem is more urgent than any thyroid issue.

And she could be right about not having a thyroid problem. Improving her nutrients could improve the performance of her thyroid.

Ask your daughter to watch this :

youtube.com/watch?v=BvEizyp...

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