Chronically fatigued 18 year old daughter - try... - Thyroid UK

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Chronically fatigued 18 year old daughter - trying to make sense of her blood test results

Cookerybookaddict86 profile image

Hi, I have an 18 year old daughter who is suffering from chronic fatigue (amongst other symptoms such as very low immunity, acne and awful constipation/stomach problems, hair loss and elevated LDL cholesterol). She's currently so ill that she's had to withdraw from her A levels and sadly won't be able to start Uni in the Autumn which is devastating for her.

I've posted some previous blood tests results about a month ago (from Medichecks) and I received some very helpful advice about a possible diagnosis of central hypothyroidism. Since then we've had more blood tests carried out and she has also been seen by an endo. Her most recent blood tests are as follows:

TSH - 1.54 (carried out at 4.30pm)

FT3 - 3.4 (3.1-6.8), her level was then tested a week later and it was exactly the same!

FT4 - 12.7 (12 - 22)

Thyroid antibodies tested previously and all normal

Vitamin D - 119 (50 - 200)

Ferritin - 75 (13-150)

Active B12 - 150 (37.5 - 150)

Folate - 12.23 (no range given)

9am Cortisol - 242

Short Synatchen test - base level 170 (at 11.15am) increased to over 600 an hour later. ACTH - still waiting for this result, but endo says it will be fine as she passed the SST with flying colours.

IGF1 - 37.9

All female hormones were in range when tested although she does have very irregular periods.

We assumed that her endo would diagnose her with central hypothyroidism, however all she's really said so far is that her thyroid hormones look a bit sluggish. As her females hormones and IGF-1 have come back as normal she doesn't think she has hypopituitarism but she seems very unwilling to offer any other suggestions as to what else might be causing her chronic fatigue and other problems. Her letter to our GP stated "this young lady is convinced that her problems are related to low thyroid levels"!!

She has been willing to give my daughter a trial of Levothyroxine, with 25 grs as a starting dose, but has advised us that if it doesn't work we would be able to rule out a problem with her thyroid. We are pretty sure that many of my daughters problems are caused by low thyroid levels - her vitamin levels are very healthy and she also has a pretty good diet, so I don't really know where we go from here if our endo advises us that her chronic fatigue isn't caused by hypothyroidism. We're very concerned that she might end up with a diagnosis of CFS which would mean that no one would have to provide her with any further help!

I'd would love to know whether anyone has any thoughts on these results and where we might go from here. We're aware that her 9am cortisol result was pretty low (242) but as she passed the SST, our endo doesn't think it's an issue.

Many thanks for your help.

53 Replies

I’ve just read previous posts and seen the earlier blood test results which showed FT3 and FT4 to be either very low in range and occasionally under range. I completely get why this set of results is disheartening—while not wishing your daughter to have central hypothyroidism it would have been so much more “helpful” if these results had also had FT3 and FT4 under range wouldn’t it?

I’m not sure if you’ve posted the history before—but when did you first become aware something was amiss? Has your daughter always had low thyroid-type symptoms or did this follow an illness or an accident of some kind? Has she been unwell like this for long?

Thank you for your reply! Yes, the results we did with Medichecks several weeks ago showed below range FT3 (2.84) and FT4 (11.4), so it was quite frustrating when the tests carried out by the endo showed that they were in range, although only just!

My daughter has suffered from low energy/fatigue since she was about 12/13 years old. She started having bowel problems at the age of 14, and as with her fatigue, everything has worsened significantly in the last year or two. We're not aware of any accident or serious illness, she did suffer from severe and recurrent tonsillitis as a child and some blood tests we did several years ago showed that she had antibodies for EBV virus (glandular fever) although we're not aware that she ever had glandular fever. She does pick up infections very easily and for the last few months has been suffering from an intermittent sore throat, ear ache and headache, particularly in the morning. It's all a bit of a mystery......

Ah, so it coincided with that marvellous thing called puberty? If this is central hypothyroidism, that probably makes a lot of sense—all hormones work together and there’s a fine balancing act in particular between oestrogen and thyroid hormones.

Has the doctor done any tests on her pituitary function? Prolactin? ACTH? Might also be worth finding out whether her oestrogen, progesterone, LH etc are doing what they should be doing. If there is a pituitary issue, it might not only be affecting her thyroid, you see.

The other thing that occurs, given you’ve mentioned bowel issues, is coeliac disease? Is that something you’ve considered? I see her vitamin and mineral levels are pretty good at the moment—I assume you’ve been working on them (which ironically is probably why the thyroid hormone levels are slightly improved).

Sorry, I’ve just realised you’ve mentioned some of what I’ve asked about already, doh.

But prolactin levels might be interesting? If her pituitary is producing too much prolactin that would cause all sorts of issues from low thyroid hormone levels to irregular periods—and headaches…

No worries, thank you for taking the time to look at her results, its much appreciated. I've just checked her prolactin and it was 160 (102 - 496) so pretty normal.

My daughter has been taking supplements all winter so I'm not sure this had any bearing on her improved thyroid levels. We have been making sure that she's eating really well so this might have made a small difference - she's never dieted or restricted her food intake but with her ongoing bowel issues she often feels full very quickly and so doesn't always eat as much as the rest of us.

We bang on here a lot about improving ferritin, B12, folate and Vit D etc because every one of those things is involved in either the production of thyroid hormone or in the conversion process of T4 to T3. So yes, the improvement in her nutritional status is almost certainly improving her thyroid hormone levels (and lots of other things too).

It’s good that her prolactin levels are ok—although maybe worth checking again at some point because a pituitary gland that was pumping out too much prolactin would have been a explanation for many of the symptoms your daughter has. I’m glad it isn’t, don’t get me wrong, but every time you rule something out there’s a moment of relief followed by, “So what is it then?”

Sigh.

Right. Back to diet. So, on the one hand, it’s good that nothing’s been cut out or restricted because that makes doing a test for coeliac disease easier, if that was something you might want to consider? It could be another thing to rule out, because gluten sensitivity leads to poor vitamin/mineral absorption leads to poor thyroid function…

I still think you’re probably right with your guess of central hypothyroidism but it sounds like your doctor’s done most of the tests which might (for them at least) rule it out.

I don’t agree that taking 25mcg levothyroxine would be diagnostic though. It’s far too low a dose. I’d suggest 50mcg as a minimum to see if it might make a difference.

Many thanks for your reply. I've just checked back over her medical records and she tested negative for coeliac disease when she was 12 - I believe this was the first time we went to the doctors to request blood tests as she was absolutely exhausted and struggling to cope with school work.

We're keeping our fingers crossed that the endo will increase her levo to 50mcg fairly shortly.

OK. Good that it was checked. But just so you know.… coeliac disease is a sneaky thing. You don’t always get a positive result the first time around. Plus, annoyingly, there’s such a thing as non coeliac gluten sensitivity—negative for coeliac, still completely intolerant to gluten.

What about other things? I’m wondering if the bowel thing is a clue in its own right. Anyone considered Crohn’s Disease?

Or endometriosis? That can also start causing bowel issues from puberty onwards.

Chronic illnesses lower thyroid hormone levels unfortunately.

That's interesting about coeliac disease....perhaps we should have her tested again although she eats very little, if any, wheat as she finds it quite difficult to digest.

We've never thought about Crohn's disease. She has been under the care of a gastro for a couple of years but all he's done is diagnose her with a lazy bowel/slow transit constipation and prescribed laxatives. She has had calprotectin testing done which I think rules out any inflammation in the gut.

From what I remember (nurse a very long time ago now :) ) calprotectin is good at detecting IBD, so yes, probably not likely to be Crohn’s. But it’s less good at detecting Coeliac Disease I think. Not sure why.

SlowDragon profile image
SlowDragonAdministrator

Agree absolutely with Jazzw

Get coeliac blood test done.

Accept 25mcg levothyroxine ….it’s too low but it’s a start

(Standard starter dose of levothyroxine is 50mcg)

Avoid Teva brand levothyroxine initially (it upsets many people)

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets

Accord only make 50mcg and 100mcg tablets

Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets

beware 25mcg Northstar is Teva

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

Push for next dose increase to 50mcg after next blood test

Dose likely to need to increase over coming months

Approx how much does she weigh in kilo

SlowDragon profile image
SlowDragonAdministrator

nice.org.uk/guidance/ng20/c...

1.1 Recognition of coeliac disease

1.1.1 Offer serological testing for coeliac disease to:

people with any of the following:

persistent unexplained abdominal or gastrointestinal symptoms

faltering growth

prolonged fatigue

unexpected weight loss

severe or persistent mouth ulcers

unexplained iron, vitamin B12 or folate deficiency

type 1 diabetes, at diagnosis

autoimmune thyroid disease, at diagnosis

irritable bowel syndrome (in adults)

first‑degree relatives of people with coeliac disease.

Has this endo not thought that if the pituitary is functioning normally, it could be a problem with the hypothalamus? The hypothalamus has to stimulate the pituitary to make TSH. So, if the hypothalamus has a problem, the pituitary will not get the stimulus it needs, and TSH will be low. I believe that testing the hypothalamus is problematic, but just because all the other pituitary hormones are 'normal', does not mean there's not a problem with the TSH, because there obviously is. One sometimes wonders if their eyes are connected to their brain!

Jazzw profile image
Jazzw in reply to greygoose

I was just thinking the same. Plus, this statement from the Endo:

Short Synatchen test - base level 170 (at 11.15am) increased to over 600 an hour later. ACTH - still waiting for this result, but endo says it will be fine as she passed the SST with flying colours.

Huh? It makes no sense that the ACTH will be fine just because she passed the SST. Does the Endo even understand how SSTs work?? The patient is injected with synthetic ACTH—if that causes the cortisol to rise, great. But it doesn’t prove that the patient is able to make their own ACTH, only that when you bypass the process of the pituitary making it, there is a cortisol response.

Now, hopefully the ACTH will be fine, but you can’t guess that from the results of a SST.

greygoose profile image
greygoose in reply to Jazzw

I think it's more likely to be not fine at all. Because what the SST test shows - or disproves - is a problem with the adrenals themselves. If they aren't getting the stimulus from the pituitary they need, then they won't make cortisol. And, that has rather been proved by these results: the pituitary is not functioning correctly, if I've understood it correctly. But when the adrenals are given that stimulus, they are capable of producing adequate cortisol. Isn't that how it works? Hope I haven't confused you as much as I've confused myself, there! lol

Jazzw profile image
Jazzw in reply to greygoose

That’s how I understand it. The SST is done to make sure the adrenal glands can do their job given all the right conditions.

The jury would still be out on the pituitary gland being able to create those conditions in the first place.

greygoose profile image
greygoose in reply to Jazzw

That's what I thought. :)

Yes, this is my understanding too, thanks for your replies!

We should get her ACTH result back in a couple of days so it will be interesting to find out what it is. It wouldn't surprise me if it was low given that her 9am cortisol was only 242 but the endo seems to think otherwise! My daughter also has very low blood pressure (82/50 a couple of weeks ago) but none of the doctors we've seen have ever picked up on it. We're assuming it's somehow connected to her low thyroid hormones or low cortisol.

Poor thing—I’m feeling sorrier and sorrier for her. She must feel utterly rubbish. x

She does, and it's come at the worst possible time - a few months before her A levels, so we're currently in the process of negotiating with her college to allow her to withdraw this year's A levels and do them next year - we can only hope that she'll be better by then. I'm not sure her college really appreciates how ill she is.

Yes, low blood pressure is a hypo symptom. But doctors don't know much about symptoms, I'm afraid.

SlowDragon profile image
SlowDragonAdministrator

healthunlocked.com/thyroidu...

Have you had ultrasound scan of thyroid done yet

20% of Hashimoto’s patients never have high thyroid antibodies

Ultrasound scan can aid diagnosis

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...

EBV and thyroid

thyroidpharmacist.com/artic...

drhedberg.com/epstein-barr-...

hypothyroidmom.com/hashimot...

drchristianson.com/epstein-...

You've sent me some really interesting links - I will read these later, thank you.

My daughter hasn't had an ultrasound scan done but we will definitely ask for one. I often wonder whether either the recurrent tonsillitis she had as a child which ended in a tonsillectomy aged 8, or possibly the EBV virus which we were never aware of, might have in some way damaged either her thyroid or her pituitary gland.

SlowDragon profile image
SlowDragonAdministrator in reply to Cookerybookaddict86

Tonsillectomy (or the reasons for needing tonsillectomy) linked to risk of developing thyroid disease later in life

bjgp.org/content/long-term-...

pubmed.ncbi.nlm.nih.gov/273...

journals.plos.org/plosone/a...

I had tonsillectomy age 4 …..was downhill from then….diagnosed with autoimmune thyroid disease age 34! Not correctly treated until 58 …..

When I was volunteering in Brazil 20 years ago, I worked in an orphanage with young boys. When we got home to the states several of us began to have ghe extreme tiredness, swollen glands, stomach problems and hives all the time hives. It took several years befor I was tested for Hasimotos but my thyroid gland was so. Ad the Endocrinologist said I was near death. My TSH was 52.1!! I know but it really was! It was that Epstein Barr virus that nearly killed me. I’m sosordy your daughter has to go through all this at her young age but it sounds so similar to what I had I just had to jump In here. Please make sure she gets protein as many ways as possible. If she likes protein shakes make her some she enjoys. She needs her mom right now. I wish I’d had my mom or health unlocked back then. I’ll pray for you. She needs rest and maybe some Gatorade for the electrolytes. I had chronic fatigue syndrome, joint pain, muscle pain and weakness. I’m hoping your precious daughter can regain her strength very soon.

Thank you for your reply. It sounds as though you were very ill when you were diagnosed, how scary for you!

It's interesting to hear that your thyroid problems were caused by the Epstein Barr virus, my daughter doesn't actually have raised thyroid antibodies and her TSH levels are also normal, so it's hard to know what's causing her issues, although the info which Slow Dragon has very helpfully provided suggests that some people can have autoimmune hypothyroidism without having raised antibodies. Protein shakes are an excellent idea and luckily my daughter still has a pretty good appetite despite feeling very ill.

SlowDragon profile image
SlowDragonAdministrator

Also you mentioned possible PCOS in previous posts

Has she had testosterone levels tested

And ultrasound scan of ovaries

nhs.uk/conditions/polycysti...

Her testosterone levels are normal but I think she may well have PCOS as I had it mildly when I was younger (and I seem to remember that my testosterone levels were always mid range too). This is something we need to look into but perhaps we've figured out her thyroid issues.

SlowDragon profile image
SlowDragonAdministrator in reply to Cookerybookaddict86

PCOS and Hashimoto’s extremely strongly linked

verywellhealth.com/things-w...

palomahealth.com/learn/pcos...

frontiersin.org/articles/10...

Ask that oestrogen and progesterone tested too

thyroidpharmacist.com/artic...

Thank you, you've provided me with so much useful information! I was aware of a link between PCOs and thyroid issues and actually got my own thyroid hormones checked when my daughter did hers but my FT3 and FT4 are completely mid range normal which makes her results all the more strange.

Many thanks for your reply, and info about Teva - this is actually the brand she's been given, so we may ask for another brand for her next prescription.

I think she weighs around 50kg so her BMI is on the low side (17.7) but she's never dieted or restricted her food, so we're doubtful that this is the cause of her low thyroid hormones. She tends to feel full/bloated quite quickly so I guess she probably does eat less than the rest of the family but this is a result of her very slow moving digestive system - I guess its really a bit of a chicken and egg situation!

If this reply is for SlowDragon, she might not see it because you didn't click on the blue 'Reply' button under her comments. I've tagged her for you.

With such low thyroid hormones, she probably has low stomach acid, and that would cause the bloating. The undigested food ferments in the stomach and causes gas which makes you feel bloated.

Another thing you could try reminding this endo about is that cholesterol levels used to be used to diagnose hypothyroidism. High cholesterol is caused by low T3. Your daughter's T3 is very low, hence the high cholesterol.

Better still, could you see someone else who might actually understand something about thyroid? Because this one understands nothing.

SlowDragon profile image
SlowDragonAdministrator in reply to Cookerybookaddict86

Well you can try Teva ….it may suit her

But if it causes issues try different brand ….don’t assume it’s the levothyroxine

Teva contains mannitol instead of lactose

So people who are lactose intolerant often prefer it

But mannitol can change gut biome in others causing issues

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

Once your daughter find a brand that suits her best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

New guidelines for GP if you find it difficult/impossible to change brands

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex

SlowDragon profile image
SlowDragonAdministrator

High cholesterol levels and being hypothyroid

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

Hi there! I don’t have much advice and you’ve already received so much. Just in relation to the celiac test, you mentioned that your daughter doesn’t eat much wheat, prior to the test it’s important that she has been including it in her diet daily for 6 weeks (I know this is a nightmare when it affects digestion). I think guidelines suggest at least 2 slices of bread a day.

Good luck! I so hope you get the answers and she feels better soon.

I can't offer any advice but my daughter is in a similar situation. She's 14 and she has been told that she's had glandular fever previously but we know nothing about it. She's had dizziness, headaches and a sore throat. A blood test showed a positive ANA result. She's started Levo at 25mg and Pizotifen 1.5mg it has helped but not totally got rid of her symptoms. I'm speaking to the doctor about increasing her Levo to 50mg. I believe Covid has kick started this in her as prior to her infection last October she was healthy.

Good luck with getting her assessed and on the correct treatment.

Sorry to hear that you're in a similar situation to us. My daughter has had an intermittent headache, sore throat and ear ache for months and we don't really know whether this is caused by her low thyroid hormones possibly suppressing her immune system or whether there's something else going on. Has your daughter been diagnosed with hypothyroidism too? It's good to hear that the medication is helping her. I hope she makes a full recovery soon.

No official diagnosis yet but an acceptance that she needed Levo as was displaying hypothyroidism symptoms. Although the Dr thought the headache and sore throat were separate issues so she had an mri too. Awaiting the results currently, struggling to get an appointment though.Good luck with getting your daughter sorted - it's a battle at times!

Yes, it's a complete nightmare - my daughter has been on the waiting list for an appt at our local hospital since Jan 21, and we can't help thinking that she might not be so ill now had she been seen earlier. We're now seeing a private endo and trying not to think too much about the costs.

That's interesting that your daughter was given Levo without an official diagnosis, your doctor sounds quite enlightened! Good luck with the MRI results, I hope you don't have to wait too long for them.

It's really hard to know whether sore throats and headaches etc might be linked to hypothyroidism. From what I've read on here, some people certainly think there's a connection but I know that they're also linked to post viral fatigue, so it's difficult to figure out what's causing them. I hope you have some answers soon.

I am sorry that I cannot help with your daughters problem, just to say please keep going if only we all had a lovely Mum like you. Good Luck

Thank you for your kind words.

I’m also unable to help. But I just wanted to say I so admire how you’re supporting your daughter. It’s tough for her to miss her A Levels. But hopefully, another year will allow you to help her get better and do well in them.

When I was a teenager, I had glandular fever before the Scottish equivalent exams and was very ill with it. Rather than have me withdraw from the exams and wait till the following year, I ended up missing one through sickness, and not doing as well as I should have in the others because my brain was so fatigued. I’ve often wished my mother had advocated for me more at that time.

Thank you for your very supportive message. Its been a really hard decision to withdraw her from her A levels particularly as her college have indicated she may not be able to return next year (it's a very complicated situation!) However, posts like yours are really helpful in confirming that we are definitely making the right decision - her health always has to come before exams. Fingers crossed she'll be in a better place next year.

Are you able to DM me. I seem to not be able to do so to you?

Hi,

I'm very sorry to read about the hard time your daughter is having.

I usually post on the PAS (Pernicious Anaemia Society) forum.

Her Active B12 result seemed at the top of the range.

Was she taking B12 supplements or having B12 injections prior to this being tested?

The reason I'm asking is that high serum (total) B12 levels without taking B12 supplements or having B12 injections can sometimes be the sign of a serious health condition.

Do you have any serum (total) B12 results?

I am not medically trained but I would expect her GP to test her liver and kidney function and to do some other blood tests if she has high serum B12 without taking B12 supplements/B12 injections.

It seems strange but it is possible to have symptoms of B12 deficiency with a serum (total) B12 result that is within range or even above range.

Might be worth looking up "Functional B12 deficiency" where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells.

NHS link B12 deficiency - mentions Functional B12 deficiency

nhs.uk/conditions/vitamin-b...

Has she had MMA and homocysteine tests?

The reason your post caught my eye was that it's quite common for people on PAS forum to have a diagnosis of CFS/ME or Fibromyalgia in their medical history.

It's also quite common for people on PAS forum to have thyroid issues.

Lots more info about PA and B12 deficiency on PAS forum. Some forum posts mention functional B12 deficiency.

"she tested negative for coeliac disease when she was 12 "

If you have time, check NICE guidelines below to see if the recommended diagnostic process for coeliac disease was carried out. From personal experience it isn't always.

NICE guidelines Coeliac Disease

nice.org.uk/guidance/ng20/c...

There are some situations in which people with coeliac disease can get a negative result in coeliac tests.

More info on Coeliac UK website

coeliac.org.uk/home/

Hi Sleepybunny, thank you so much for taking the time to reply to my message and flag up a possible issue with my daughter's B12 results. She was infact taking a multi-vitamin with a very large amount of vitamin B12, so we had assumed that this is what had caused the high result. However, we were quite alarmed how high it was, so she's having a break from the multi-vits for the time being!

She had blood tests for liver health and kidney health done at the same time (via Medichecks) and these were all fine. However, bearing in mind what you've said, she's going to the surgery next week for another blood test, so I will ask them to do her total B12 to check that the levels have now decreased. Her last blood test for total B12 came back at 640 ng/l but this was done 18 months ago. I have a feeling that her homocysteine levels have also been done at some point but this is something else I need to check. Many thanks for your help.

Might also be worth checking that she's had MMA (methylmalonic acid) test done in past.

If there's a family history of auto-immune conditions, has she had some basic screening tests for auto immune conditions?

High levels of B12 if a person is supplementing B12 would not usually be something to be concerned about.

Has she ever been checked for a primary immunodeficiency?

There is a charity "Immunodeficiency UK" which supports those with immunodeficiencies.

immunodeficiencyuk.org/

People with immunodeficiencies can experience frequent and persistent infections.

"We're very concerned that she might end up with a diagnosis of CFS "

I had a diagnosis of ME/CFS which for me meant doctors' diagnostic box ticked and no more investigations.

In my part of UK, ME/CFS was treated more as a mental health condition, very frustrating.

ME/CFS in UK is supposed to be a diagnosis of exclusion, meaning that a person should not get that diagnosis unless all other possible diagnoses are excluded.

I suggest you read the latest version of NICE guidelines ME/CFS which was published in 2021 and maybe look at the ME Association website

NICE guidelines ME/CFS

nice.org.uk/guidance/ng206

ME Association website

meassociation.org.uk/

Good luck to you and your daughter.

Many thanks for the reply and all the info - we've had much better advice from this forum than we've received from the various doctors my daughter has seen over the last few years!

Has she ever been checked for a primary immunodeficiency?

Yes! She has low IGA, just in range IGG and normal IGM but we were assured by our GP that the low IGA was nothing to worry about, and in any event there's nothing that can be done to raise low IGA.

My understanding is that an IGA deficiency can cause asthma, allergies, severe respiratory and sinus infections none of which my daughter has ever suffered from, so we've never looked it this any further. However, you're quite right - I think it may be something we need to investigate, before we accept a diagnosis of CFS. I don't quite know how it would tie in with all her other symptoms which (I think) point to a problem with her thyroid. It's all very confusing and made much harder by the fact that our local hospital is absolutely hopeless - our GP made a referral for her fatigue to be investigated back in Jan 2021 and we're still waiting for an appt!

Should be some useful info on website for uk charity "Immunodeficiency UK" about low IgA.

For others reading the thread, IgA is an immunoglobulin. This is a protein produced by the immune system. Antibodies are immunoglobulins.

If she has IgA deficiency and borderline results for other immunoglobulins then maybe this is why her thyroid antibody results were "normal".

I hope your daughter is treated kindly by her doctors.

NICE guidelines Patient Experience - adults

nice.org.uk/guidance/cg138

NICE guidelines Patient Experience - children

nice.org.uk/guidance/ng204

NICE guidelines Shared Decision Making

nice.org.uk/guidance/ng197

Interesting....I am right in thinking that if her immunoglobulins are low she might not be able to make thyroid antibodies?

I've just checked the results from the last time the surgery checked her immunoglobulin levels (3 years ago), and her IGG was only 6.28 (range 6-16), so obviously no one ever commented on this as it was obviously a "normal" result as far as they were concerned. I'm going to ask for her immunoglobins to be rechecked - thank you for bringing this up.

"am right in thinking that if her immunoglobulins are low she might not be able to make thyroid antibodies?"

I think that might be true, I don't know much about immunodeficiency though.

Perhaps you could ask this as a separate question on this forum as hopefully there is someone who knows more about it.

Sometimes I think GPs don't have time or possibly don't always think to look at trends in results.

Results that are increasing or decreasing over time may be significant even if the result is within normal range.

Another thing you might find helpful is to look up relevant local clinical guidelines for your CCG (Clinical Commissioning Group) or Health Board and compare them with the relevant NICE guidelines etc.

On PAS forum, I sometimes suggest that people try keeping a daily symptoms diary.

Thank you for all your suggestions and advice, you've certainly given us several more avenues to pursue - it would be wonderful to have a doctor who could look at the big picture, but I guess we need to accept that we'll have to do it on our own with help from forums like this one.

More thoughts about coeliac disease

"she tested negative for coeliac disease when she was 12 "

1) Were her doctors aware when she was tested for coeliac disease that she was IgA deficient?

The usual test for coeliac disease is tTG IgA which looks for a particular antibody to gluten.

People with IgA deficiency need a different test for coeliac disease as their bodies cannot make the tTG IgA antibodies.

I suggest you both check her records to see what coeliac tests were done.

People with IgA deficiency will need one or more of the coeliac tests listed in link below. See section on IgA deficiency.

coeliac.org.uk/information-...

As her IgG was borderline, I don't know if the other tests listed above would be useful in her case.

Might be worth asking Coeliac UK what tests are used if someone has low IgA and low IgG.

2) When she was tested for coeliac, did her doctors ask her to eat plenty of gluten in more than one meal per day for several weeks before blood was taken?

This is to ensure that there are plenty of antibodies to gluten in the blood.

Patients may get a negative result in coeliac test if they weren't eating enough gluten.

Coeliac disease is sometimes diagnosed by a gut biopsy.

Coeliac disease sometimes presents as a skin condition called dermatitis hepetiformis.

coeliac.org.uk/information-...

Might be helpful to take photos of any unusual skin rashes.

More info in link to NICE guidelines on Coeliac disease in my other reply.

If the doctors previously only tested tTG IgA, maybe it would be worth testing for coeliac disease again using other tests?

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