Advice please for my Daughter

Dwsmith, FT4 is almost bottom of the range and one would expect to see TSH considerably higher. Before self medicating ask your daughter's GP to consider secondary hypothyroidism (pituitary dysfunction) or tertiary hypothyroidism (hypothalmic dysfunction). Pituitary dysfunction is more common and your GP can do a pituitary function test to check. Secondary/tertiary hypothyroidism is usually managed in endocrinology as other hormones may be affected and need to be evaluated.

cks.nice.org.uk/hypothyroid...

patient.co.uk/doctor/pituit...

The thyroid gland is usually healthy in secondary/tertiary hypothyroidism but it can't produce hormone without sufficient TSH stimulus. Treatment is thyroid hormone replacement and Levothyroxine is what will be prescribed on NHS.

Thankyou Clutter, so secondary Hypothyroidism is treated the same as Hypothyroidism..? Thankyou for the references, have looked at these and need to see her Dr again and need to insist on further testing, she is going to hate the fact Iv had a private blood test done - she couldn't refuse to treat her could she?

Dwsmith, yes treatment is Levothyroxine.

I don't see why your GP should be annoyed you've had private tests she wouldn't do. It saves her practice the cost of testing.

I'm not so sure it is a thyroid problem... yet. At some stage it probably will be. But I'm interested in the explanation that's been given for your daughter's severe anaemia. Why was she so anaemic? Have any further tests been done? I'm thinking possible coeliac disease, but there may of course be a far more obvious explanation.

Thyroid issues do sometimes seem to be secondary to some other autoimmune problem and improve when the other autoimmune issue is treated. Her TSH is still under 2.0 and her FT3, while low, isn't a low as I'd have expected, considering that low FT4.

Hi Jazzw, the Dr put her anaemia down to her diet, she did a coeliac test which was negative. My daughter also had very low range B12 and yet the Dr dismissed this too. She's taking Hemaplex for her anaemia which is now in range but she's been told to stop it in a couple of weeks without being monitored - sounds strange, how do we know it won't fall back down, she was borderline transfusion level to start with.?

Your doctor sounds positively dangerous. Your daughter has or has had :

Severe iron deficiency

Low in range B12

Low in range thyroid hormones

And your doctor is doing practically nothing to fix this and then is leaving your daughter to rot. The poor girl must feel terrible!

I know from personal experience that severe iron deficiency can lower thyroid hormone output. Until you get iron up to a healthy level you won't know whether this will be sufficient to perk up her thyroid or not. Thyroid treatment may still be necessary, but I would hold off just a little bit until you get her nutritional levels at a sensible level. It might be enough, it might not be.

Ferritin needs to be mid-range. Just getting the level into the bottom of the range is not good enough. As you say, unless the conditions that made her so anaemic in the first place aren't fixed or understood the likelihood is she will just drop low in range or under range again.

Very low B12 needs to be followed up urgently - low B12 causes neurological damage which will become permanent if left for too long. But first, your daughter needs to be tested for pernicious anaemia. Until she has those tests she should NOT supplement B12 or B Complex because it makes the testing unreliable. As soon as B12 is supplemented it is very hard to get a diagnosis of pernicious anaemia at all. If the tests come back negative then supplement with either Jarrow Formulas or Solgar 5000mcg methylcobalamin. High in range or over the range B12 is not dangerous (unlike other nutrients for which more care is needed) if it is caused by supplementing. Also, supplement with a methylated B vitamin complex to go with it. The only one I know of is Thorne Research Basic B Complex, take one a day.

Another personal anecdote, but one which is common to many of the people who come here - I tested negative for coeliac, but when I gave up gluten as an experiment all sorts of things improved for me. My ferritin levels rose quite dramatically for a start. I'd spent nearly two years taking iron supplements and my progress was achingly slow, and if I stopped taking iron my levels dropped rapidly. Giving up gluten was the thing that made the difference. I suggest your daughter tries this. It has to be done 100%, it isn't possible to be "almost" gluten free, you simply can't cheat.

It is clear to me that to me that your daughter needs a new doctor as soon as possible. The one she has been seeing will not make her well. If you see another doctor and still get no joy with the iron levels, then your daughter will need to supplement. But I'm reluctant to suggest iron supplements for someone who is legally still classed as a child. Unlike B12, iron supplements can be dangerous in high dose or overdose, and although it is unlikely that overdose would occur quickly in someone with very low levels of iron, I still feel it is something a GP should monitor.

Thanks for explaining much better than I could what I was wondering, Humanbean. That's exactly it. The doctor here certainly seems negligent in the extreme. Many teenagers don't eat especially well but aren't as ill as your daughter sounds. I don't know what she eats, but even if it's wall to wall junk food her bloods would be better than that. She's clearly not absorbing. She isn't vegetarian, is she?

Hi Jazzw, no she's not vegetarian, she eats some meat, Kale broccoli spinach, she just doesn't eat lots of meat. Her Ferritin to start was 4 (5 - 204), it improved to 35 on las blood test, we still need it up much higher but she stop supplemting in a month….? Her B12 was 204 - (187 - 833)

she never mentioned that it was low but it is too low for her age isn't it?

Thankyou Humanbean, DR said its either caused by Coeliac (negative) heavy periods (negative) or her diet , and I said or Hypothyroidism - its in the family - she completely dismissed it because of her TSH which was 1.9. Her ferritin before supplementing was out of range at 4 ( 5 - 204), the recent blood test shows it at 35, Dr said its much better, I said its still a bit low isn't it? She said, yes Id like to see it a bit higher but stop supplementing in a month…? Thankyou, I need to take all of this information and if necessary find a new Dr. She also suffers from Vaginal Atrophy - this is way to young isn't it? Her female hormones were checked and also very low in range but she said they were normal for her age….? Thankyou so much for your time xx Will keep you updated xx

With a range of 5 - 204 for ferritin, your daughter needs to raise her level to about 100 (ish), so she still has a long way to go. If she raised it by 30 with supplementing, how long did that take? You could use that as a rough (very, very rough) guide to how long it might take to get her levels up to an ideal level.

I forgot to mention - with B12, if she has to start supplementing with the methylcobalamin I suggested above, it needs to be put in the mouth between teeth and cheek or under the top lip or under the tongue and just allowed to dissolve very slowly. No sucking or chewing. The B Complex can just be swallowed.

Sorry, but I don't know anything about vaginal atrophy. I imagine it has something to do with insufficient production of sex hormones. You may find this interesting, because it gives a possible cause for someone to have insufficient sex hormones. It suggests to me that your daughter's adrenal function is suffering, but I must make it clear I don't know what I'm talking about on this subject!

vimeo.com/3818805

The above video is short - less than 4 minutes. Hope it helps. People with low thyroid function very frequently have problems with cortisol production, which I why I thought it would be relevant.

Sorry Iv answered you below xx

Humanbean see below xx

I should also have said above...

Vitamin C supplements are a good idea and don't need to be monitored. Decent quantities of vitamin C help the body to absorb iron and so should be taken with supplements (if your daughter ever gets to take some!), or with food. Get supplements which are 1000mg or 1g, and take one per meal or per iron supplement. Start with just 1 per day with a main meal, after a few days add a second with a different meal, then a few days later add a third with meal 3. The only side effect to watch out for is diarrhoea. If that happens reduce by one pill/capsule.

I'm sorry your daughter's not too well and most doctors will not consider a diagnosis if our TSH is less than 10. Some will take clinical symptoms into consideration.

I would ask to be referred to an Endocrinologist and this is an excerpt:

For example, a low T4 level could mean a diseased thyroid gland ~ OR ~ a non-functioning pituitary gland which is not stimulating the thyroid to produce T4. Since the pituitary gland would normally release TSH if the T4 is low, a high TSH level would confirm that the thyroid gland (not the pituitary gland) is responsible for the hypothyroidism.

If the T4 level is low and TSH is not elevated, the pituitary gland is more likely to be the cause for the hypothyroidism. Of course, this would drastically effect the treatment since the pituitary gland also regulates the body's other glands (adrenals, ovaries, and testicles) as well as controlling growth in children and normal kidney function. Pituitary gland failure means that the other glands may also be failing and other treatment than just thyroid may be necessary. The most common cause for the pituitary gland failure is a tumor of the pituitary and this might also require surgery to remove.

endocrineweb.com/conditions...

Some links which may be helpful for you:

thyroiduk.org.uk/tuk/diagno...

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/about_...

Her T4 is very low - she cannot convert to sufficient T3 - the active hormone.