More blood results -17yr old: 🤬 This is so much... - Thyroid UK

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More blood results -17yr old

NWA6 profile image
NWA6
23 Replies

🤬 This is so much hard work!! Trying to work with Drs and labs who continually F**K up is really trying my patience!

2wks ago I persuaded our Dr to rest my daughter. She agreed to put in for TSH, FT3/4.

Lab did TSH and FT3 but no FT4. Given that her FT3 was at the lower end and my Dr understood my concerns she agreed to another blood test for FT4 and antibodies.

Today I phone for the results and FT3 has been done again but still no FT4! 😩 I had to speak to another DR for the results and so she kept reintegrating that there is no concerns and to retest in 2mths. I persuaded her to again submit for the FT4 now so that when we do test in 2mths we have the whole picture, esp given that now her FT3 is out of range. She insisted that she didn’t think it was a problem because the range is for adults an not necessarily suited for young people 🤬

23/4/19

TSH - 1.3 (0.35-5)

FT3 - 3.6 (3.5 - 6.5)

B12 - 965 ( upper limit 900)

Folate - 4.1 (2-17)

Ferritin - 63 (15-250)

1/5/19

TSh - 0.96

FT3 - 4.0 (4.7 - 7.2)

Ofcourse I tried to discuss the low results but Dr just brushes me of saying everything is on range 😩

I know it’s difficult to advise as we don’t have FT4 and no antibody result but any thoughts please?

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NWA6 profile image
NWA6
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23 Replies
BadHare profile image
BadHare

Sorry I can't comment on the pertinence of free T4 testing. I thought it was free T3 that was most important. Hope someone corrects me if that's wrong!

Maybe getting folate & ferritin higher up the range might make your daughter feel better.

NWA6 profile image
NWA6 in reply toBadHare

Yes BadHare you are correct that FT3 is very important but there are all sorts of reasons why FT4 is needed too. Within my Hashimotos I don’t convert well so my FT3 is always low even in my FT4 is in the mid-higher range. I’m desperate to find out if she has antibodies or a mid range-higher FT4 which would suggest a conversion problem or low FT4 which may suggest pituitary/hypothalamus problems. OR she has an infection that’s causing low FT3 🤷‍♀️ 😩 I just don’t know 🙁

It’s just bizarre that so many on this forum struggle to get their Dr to check FT3 and here I am struggling to get FT4 😩

We’ll work on folate and ferritin.

BadHare profile image
BadHare in reply toNWA6

Ah, silly me, I hadn't thought of that!

It is odd when that's they won't do the test everyone else has so you can compare, & shocking we have to do their jobs for them when they're obstructive.

Hope you get the right tests & help soon. It's worse when our children are ill than ourselves!

Mel x

soupybp profile image
soupybp

From one mom to another - hang in there. I, too, feel like trying to get my 16yo daughter sorted is a full time job on top of my full time job. And it is so painful watching our "little ones" struggle under these health burdens.

I am in the US. My daughter had low fT3 similar to what yours tests are showing. The gp, ob/gyn, psychiatrist, and an integrative specialist never said anything about the ranges not being for "young people." I think that is a bit of rubbish. However, I had a mixed bag on willingness to do anything about it.

A direction to investigate may be reaching out to the Catholic diocese office in your area and ask if they know of a NaPro Technology doctor in your area (will usually be an ob/gyn). My understanding is that there are doctors with this training in the UK. While these doctors are typically Catholic, they don't push religion...BUT they try to get to the root of issues and are fairly adept at diagnosing and treating thyroid issues because that is such a common cause of infertility. They also do well with identifying other hormonal imbalances and will treat in a safe manner (not just throw artificial birth control at it).

For us, the NaPro ob/gyn was critical in getting treatment initiated for hypothyroid and estrogen dominance. That doc has now handed us off to another physician that has more expertise in adrenals, heavy metals, etc...but it seems that now that treatment has started, others are more interested in continuing it.

NWA6 profile image
NWA6 in reply tosoupybp

Thanks soupybp for the show of support. We don’t have denominational Dr’s in this country, it’s secular,so much of what you have written has gone over my head 😬 Are you saying that an Ob/gyn treated your daughter for hormone problems and it made a difference? Sorry for sounding thick, I think it’s just the cultural differences 😬

soupybp profile image
soupybp in reply toNWA6

Probably cultural. Let me try to clarify. It can be hard to locate which doctors may be NaPro Technology trained - people don't always know what that is so it isn't heavily advertised. Usually the Catholic diocese office will have a list for your area to help Catholics struggling with fertility issues find options that are not IVF. The doctor office will not be denominational, per se...but the NaPro Technology (Natural Procreative Technology) approach appeals to doctors who are practicing Catholics in their private lives. Rather than jumping to artificial treatments, they try to find and treat the underlying causes of infertility - which commonly include thyroid issues, sex hormone imbalances, or conditions like PCOS/endometriosis.

One of the things that the NaPro Technology ob/gyn had her do was take a fertility monitoring class called the Creighton Method. That can highlight issues and help identify when ovulation occurs by watching and charting cervical mucus (it is much easier than it sounds). He was able to use her chart to see that she likely had a hormonal imbalance...and to time a series of blood draws after ovulation (he said it should not be a single blood test - he did every other day to total 5 tests). She had low progesterone levels and estrogen dominance in addition to her hypothyroidism. It seems that this is somewhat common - interconnection of the OAT axis (ovary - adrenal - thyroid). Read up on "OAT axis" - there may be something more there to benefit you. Estrogen that is not properly balanced with progesterone can impact production, processing, and utilization of thyroid hormone.

Although she is not completely better - we have her fT3 up to the top end of the range and have had multiple cycles of bioidentical progesterone supplementation after ovulation (first in December). He had indicated to me that it may take several cycles of controlling that imbalance to see results. She had an admission to the psychiatric hospital at the first of January (she had also been in Apr, early July, mid Aug, late Oct prior to that Jan) - she has not been back since (a "new" record), and she seems to be doing *very* gradually better. Testing last month showed that even with the progesterone supplement she was taking, it still was not enough to completely resolve the low progesterone/estrogen dominance, so I am expecting an increase of dose when we meet with doc. I still think her thyroid may be undertreated too, even

When we track her symptoms (mental and physical, sleep, appetite), there is definitely a cyclical pattern.

NWA6 profile image
NWA6 in reply tosoupybp

School run in progress but I’ll get back to you later 🤗 Thank you

NWA6 profile image
NWA6 in reply tosoupybp

So I don’t know what NaPro technology trained is? I’m not sure of the link between fertility monitoring and thyroid? I’m not sure I can go down the female hormone path yet until I follow the thyriod one, if that make sense. So does your daughter take any thyroid meds or her FT3 bettered when you treated the sex hormones?

soupybp profile image
soupybp in reply toNWA6

She is taking NDT for thyroid. That improved her fT3 but her rT3 also increased and she still had some symptoms. Sex hormone treatment helped the rT3 come back down some and symptoms improved further. We have now added digging into heavy metals, further nutritional deficiencies, genetic SNPs....

I have personally had similar results. I was diagnosed hypothyroid shortly after her, and I was just recently diagnosed with estrogen dominance. I am not optimally treated for thyroid yet, but addition of progesterone has been very helpful.

helvella profile image
helvellaAdministrator in reply toNWA6

Despite finding this:

naprotechnology.com/

I'm still not sure what it is!

soupybp profile image
soupybp in reply tohelvella

Yes, that is a valid website for NaPro Technology (NAtural PROcreative technology). I am not an expert in it by any means. I will try to give an example. Although my daughter is a teen and not trying to get pregnant, much of what I describe is what happened to her.

Typical doctor: Your thyroid is within ranges, so no thyroid issue. You are having miscarriages or can't get pregnant, so here are big pharma fertility drugs and let's do in vitro fertilization. You have PMS, here take these artificial birth control pills and see if they help, nevermind about the long term risks of artificial hormones.

NaPro doctor: Your GPs thyroid testing was incomplete - need to see TSH, fT4, fT3, rT3, antibodies, vitD, ferritin, folate, vitB12. Thyroid is in range but TSH is at 3 while fT3 is at bottom of range - let's review your symptoms thoroughly and run a trial of treatment. (If concerned with miscarriages/infertility, this is seen as a potential cause.) Let's teach you how to monitor your female cycle so that you can chart and learn and communicate how your body works. Even if you aren't trying to get pregnant now, these signs and symptoms of your cycle can point to issues in your body's systems. You have PMS enough to seek treatment, we will use your cycle monitoring to identify potential issues and devise a well-timed testing plan to see if your ovarian hormone systems are functioning correctly and provide bioidentical hormone support and proper vitamin/mineral supplementation to get everything working together correctly.

Basically, all those things we complain about doctors not receiving the "good ol' training" regarding thyroid? These doctors seek out that training. And they expand the concept beyond thyroid to other hormonal systems of the body. They believe that the best way to health is to try to identify the underlying issues and leverage and support the person's own body to correct them rather than throwing band-aids on things with foreign chemicals. That isn't to say they don't utilize big pharma tools - they just exhaust other options first.

In our area, most of these doctors started out in the traditional medical system but somewhere along the line were exposed to NaPro, started learning more about it, and eventually reached a point where they could not continue the way they were because they felt they were harming women. In order for them to be able to treat patients the way they felt was moral and ethical, they would break off on their own and pray they would have enough patients to support their staff. The response has been so overwhelming that these doctors have been proactively sharing the concepts with colleagues trying to recruit more docs to be like-minded and join their practice to keep up with demand.

NWA6 profile image
NWA6 in reply tosoupybp

Im not seeing any in my area. When you google natural therapies or the like it just comes up with Reki or homeopathy or reflexology, acupuncture and the like. But our system over here is completely different to the US.

SeasideSusie profile image
SeasideSusieRemembering

Central Hypothyroidism is diagnosed on the strength of a normal, low or slightly elevated TSH with a low FT4. Because your daughter's FT3 is low, it's likely that her FT4 is low as well, so because there's a possibility that it may be Central Hypothyroidism, then to satisfy that diagnosis with the NHS the FT4 should be done.

Your GP can look at BMJ Best Practice for information - here is something you can read without needing to be subscribed bestpractice.bmj.com/topics... (your GP will be able to read the whole article) and another article which explains it ncbi.nlm.nih.gov/pmc/articl... I would use these to persuade your GP to ensure that FT4 and TSH are tested at the same time. You could do some more research, print out anything that may help and show your GP.

As Central Hypothyroidism isn't as common as Primary Hypothyroidism it's likely that your GP hasn't come across it before, in which case ask or your daughter to be referred to an endocrinologist. Please make absolutely sure that it is a thyroid specialist that she sees. Most endos are diabetes specialists and know little about the thyroid gland (they like to think they do and very often end up making us much more unwell that we were before seeing them). You can email Dionne at tukadmin@thyroiduk.org for the list of thyroid friendly endos. Then ask on the forum for feedback on any that you can get to. Then if your GP refers you, make sure it is to one recommended here. It's no guarantee that they will understand Central Hypothyroidism but it's better than seeing a diabetes specialist. You could also ask on the forum if anyone has been successful in getting a diagnosis of Central Hypothyroidism, possibly in your area which you'll have to mention of course.

By the way, at 17 I have no reason to believe that the reference range will be any different from any other adult, she's not a young child.

NWA6 profile image
NWA6 in reply toSeasideSusie

Thanks SeasideSusie. This is why I’m desperate to see that bloomin number!! What if it is Central! Ofcourse the mother in me is dreaming up all sorts of tumours and cancers! I can’t help it! These bloomin Drs make me irrational! 🤬 Maybe I should just stop wasting time and book her in with my private Endo? But will he also want a wait and see approach? This is only her first thyriod test.

Would an infection cause low FT3? But surely if her FT3 is low the TSH should be higher to try and kick the thyriod in to work (if it’s not a central problem) 😩 I’m driving myself mad trying to surmise things I don’t know!!🤬

SeasideSusie profile image
SeasideSusieRemembering in reply toNWA6

I'm afraid I don't know if infection would affect FT3. Did she have an infection at the time of the test?

Why not do a private test. I think Blue Horizon will do them for under-18s. Their Thyroid Plus 3 does TSH, FT4 and FT3 which is what you need seeing as she's had B12, folate and ferritin done. Was Vit D tested?

NWA6 profile image
NWA6 in reply toSeasideSusie

She’s always got a cold/cough/throat infection. She gets over one and then goes down with another. She works with children at the weekend so open to all sorts but this is her worst year yet 😩 Tonsils removed 3yrs ago and grommets when young. She’s like her dad, always catches everything.

I was just looking at Blue Horizon but their mobile app isn’t very good, so I’ll have to look later.

Vit D was low and she’s taking Betteryou spray.

From what I’m reading it’s unusual to gave low Ferritin/folate and high B12. I wish I hadn’t supplemented her before testing but we had tried and tried to do the Home blood test using the finger prick and gave up after 3 attempts. So that was 6wks wasted, then trying to get these bloods done with GP is fairing no better 😩

SeasideSusie profile image
SeasideSusieRemembering in reply toNWA6

Well, if she can't do the fingerprick test then there's always the venous blood draw option.

soupybp profile image
soupybp in reply toNWA6

If you get somewhere on the low ferritin/folate and high B12 question (what does it mean, etc.), please share! I have been digging into that same profile. I am hopeful that our upcoming appointment with the integrative specialist will be enlightening on that front. If so, I will post what I find out.

NWA6 profile image
NWA6 in reply tosoupybp

Yes, it’s a strange combination is it not? They’re usually low together they not?

SilverAvocado profile image
SilverAvocado

Hi Paula6, I've clicked back through your old posts after replying to you on the other thread. My first thought here is Central Hypothyroid. She's had two extremely low freeT3s. Often even with Hashimoto's it won't get that low for many years.

Whenever we see a very low freeT4 or freeT3 we then expect to see a high TSH (thyroid stimulating hormone), because that is the body's response to low thyroid hormones.

The fact she doesn't have any raising of the TSH at all (about 0.8-1.8 is the usual range for a TSH when everything is going fine), suggests there is something going wrong and the TSH isn't responding.

There are two forms of Central hypo, secondary and tertiary. Secondary is when the pituitary isn't responding and creating TSH, but the pituitary gets its signal that thyroid hormone is low from the hypothalamus (which produces TRH), so tertiary is when the hypothalamus isn't doing its job properly.

I don't know too much about what is diagnostic for these. I believe for pituitary function other hormones can be disrupted, too, as it has other jobs besides making TSH. I know for one member prolactin was very high. An MRI can also pick up a benign tumour. I don't know at all how to find out if the hypothalamus isnt doing its job, but you must press your Endo and see if they know!!

Unfortunately I also don't know anything about the specifics of diagnosing teenagers :( These levels would be very very low for an adult, and I expect she is feeling really crappy :( I would want to see her on treatment ASAP, of course leaving off for a long enough time to confirm the blood tests aren't a fluke. Make sure she gets lots of rest, and perhaps cuts out more strenuous activities if possible for a while. In my experience rest makes a huge difference to overall energy levels while unmedicated.

NWA6 profile image
NWA6 in reply toSilverAvocado

Thanks SilverAvocado, I don’t know how I missed this reply from 2days ago, I’m usually hot on responding when people take the time to reply.

I am in agreement with you atm.

GPS have yet again messed up bloods and no antibody test was done. We are getting a nurse out to take blood privately.

If you see some of my other posts you’ll see that I’m not getting anywhere with my NHS endo for my own Hashimotos and low T3 so I doubt we’ll get anywhere with my daughter. I will try though after we get the private blood test results because I do worry about tumours (not in general, I’m a pretty cool cat and no nonsense mother, I’ve just been through too much with my own condition that now understand that NHS help is not there unless we’re at deaths door😩)

Otherwise I may see if my private endo has any experience with Central.

SilverAvocado profile image
SilverAvocado in reply toNWA6

If you don't get any joy with the private Endo, there is a ThyroidUK recommended list that you can get by emailing Dionne. Even on that list its possible they may not be good with Central Hypo, I've had mixed success with doctors on the list when I needed NDT.

NWA6 profile image
NWA6

Yes we’ve just changed GP after my previous GP said it was my own fault that I was unwell because I kept raising my Levo at will (bollox, I can only get Levo on prescription) anyway she’s been a PITA but this new one is not much good either so we may have to go down the private route again (I’ve recently gone private and finally got some much needed T3)

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