9 months since diagnosis and we are still no closer to understanding what is going on for her. When all results are high what does it mean please? Its like that a lot. She was reduced to 25mcg Levo 5 weeks ago (please see previous post) but all her horrible symptoms have returned eg anxiety, brain fog, fatigue, cold, nervous etc but shes also hyper a lot too. Her Endo is checking for assay interference but its clearly more than this. Thanks
Written by
Dolphin40
To view profiles and participate in discussions please or .
Could be assay interference in addition to a Hashimoto’s flare up, Graves’ antibodies or pituitary problem. Don’t have time to check your previous posts. What have they ruled out regarding antibodies and pituitary so far?
A virus can also start erratic thyroid symptoms, this can last for a long while before settling down. The doctors will need to rule things out, one by one though.
Anything really, tiny bit of unwell, does not mean that she still has it; even just a 3 days thing can trigger a autoimmune response, that can eventually settle down. Please don't worry, these are only ideas to show you that can be many things causing symptoms, and doctors are ruling out the most urgent things first. Just because they test something, doesn't mean that they think she has that thing; they are just checking to rule things out first. Please don't panic, it is a process. Look on here for foods that help and those that don't.
Has she had an MRI of her pituitary gland? Because looking at this, I can’t help but think something’s going wrong with her pituitary, rather than with her thyroid gland. Her TSH is high, which in turn is prompting her thyroid to make lots of T4 (and consequently her T3 is high).
I post this not to scare you, because it’s rare, but because the Endo really needs to rule this out before going any further. yourhormones.info/endocrine...
I questioned the pituitary as soon as she was diagnosed but the consultant brushed it off as if it was a ridiculous question. No they haven’t said she needs one.
I have read this before but its more hyper isn't it rather than hypo?
With blood tests like those, she isn’t hypo. Her TSH is raised but her FT3 and FT4 are also over-range—that’s hyper. That over-range TSH doesn’t make her hypo—she’d only be hypo if her FT3 and FT4 were low in range or beneath the range.
It couldn’t hurt to ask the question again. How are they explaining a high TSH with over-range thyroid hormone levels? We know that so many endos are clueless these days...
She has TPO’s and her T4 was lower prior to starting Levo. She was also symptomatic of hypo. Its only started going all over the place since starting Levo. Here are her results since starting Levo;
I take it no one thought to test her FT3 before starting her on Levo? The first two sets of results are missing that, I think? The chances are her FT3 was high even before she started on Levo, looking at what happened next.
But you’re right—there’s evidence of Hashimoto’s here because of the raised TPO antibodies. Which often means lots of swinging around between hyper and hypo. It’s just... the way her body is responding to the Levo doesn’t make sense. It’s possible two things are happening here (cos you know, since when was life ever plain-sailing, eh? ). One would expect the Levo to be dampening down the TSH far more than it is—but it isn’t. It’s like the TSH is running independently to the usual bio-feedback mechanism, which is what got me wondering about a pituitary problem.
They only started testing T3 when I pushed for it after i began reading up on everything. When she was first diagnosed i had no clue about T4/T3 etc now im more knowledgeable than some of her doctors it seems
It’s frightening how quickly that seems to happen when it comes to thyroid issues. Most doctors seem to know almost nothing about them or how the thyroid actually works!
I would agree with Jazzw in thinking it could be a pituitary issue. That was my first thought. As it's pumping out TSH, despite there being plenty of T4 and T3. The feedback doesn't seem to be working. The antibodies could be a result of the thyroid being bombarded with TSH. How old is your daughter Dolphin40?
I am new to all this, but seeing these bloods have they looked at
T3 RESISTANCE. They are pushing in T4 ,its altering the levels a bit, but if there is T3 resistance, T4 will also up the T3 resistance. Hope you get it sorted soon.
Yes, Have they already tested for that, I missed the read out. I am new to this, but just in case it has not been covered here. Fingers crossed for you both, that you get some answers soon.
I have pushed so hard for RT3 and they wont do it. Paediatrician or Endo. I shouldn’t have to do this via a finger prick home test which scares her. Its just disgraceful really
I know , it is awful. Even though finger prick test is horrid, at least it can be done at home, and full blood does not have to be drawn. I am a grown woman and find it bewildering, so I cannot imagine what your daughter is going through. You are right we should not have to dIY this. However, five years of me suggesting to medics that I had autoimmune, they didn't listen. My home blood kit was the best money I ever spent. Now I finally have some answers and am now getting the correct medical treatment etc at NHS. I really feel for you.......keep going with the additional private stuff, to fill the gaps. It can provide DATA to back up your requests to doctors. The advice on here is also excellent. It also helps to talk to people who actually experience symptoms also. Less isolating and also success stories too. Sending good wishes.
Have they ever done any testing for genetic markers, just throwing it out there, as that could give you vital clues and is usually a saliva test. NHS has such strict guidelines on when and why they can do these tests. It really slows the process down. You need to be able move the data gathering along to broaden the picture. There are many NHS recognised labs (as seen on here) They cannot dismiss those kinds of tests. You will get there......it would be better if the process was more speedy. My heart goes out to you and your little girl.
We have done the MTHFR test. It shows that she can struggle to methylate folate. Her folate is a little above the range but her b12 is way above 1,500) Methyl B complex has been recommended.
Are there any other ones you are thinking would be relevant?
So they are already looking at digestion and absorption of nutrients issue. Some people just don't absorb in the tummy the same as others, she is also having low appetite etc, so smaller meals through out the day etc. Look on here for Children's foods to improve thyroid symptoms. That is something you can try for yourself, obviously with care and good sense. Certain foods, additives etc have effect on thyroid function, UP and Down. Please remember though, I am not a medic, just a sufferer. A lot of mine is triggered by food stuffs etc. Please don't worry about stuff on here, it is pointers and tips. There are fantastic links though to articles, medical info and dietary influences on here. Do you have emotional support yourself ? Be kind to yourself, Rome was not built in a day.
Look after yourself too, anxiety is bad for everyone. Do the things you can do, food stuff, additional tests. You will get there, together with doctors. Look up thyroid related foods and allergens today, it all helps mitigating symptoms. Thoughts are with you all.
So they have done quite a bit of different testing....it takes time to tick all the variables off the list as they go. Looks like she will improve bit by bit rather than with just one medicine or supplement. Sending good thoughts.
I am a gardener. Most people are like dandelions, and put up with all conditions and just get on with it. Your little girl is like an Orchid, she needs the right pot, soil and food, sunlight , humidity and temperature to thrive. Everything helps x
Once you know how to look after the Orchid, it will thrive. just a side note, and I think someone mentioned it on here. She has a lot of bits and bobs going on, difficult to tell one from another. In the old days, before blood tests they used to check how thyroid med were going by taking pulse rate. A little pulse monitor cuff for the wrist. Non invasive, when she feels poorly you could check pulse ,make a log book, would probably let you know if meds were out and if she needed to rest or eat something. I have found with autoimmune thyroid, a little snack at regular intervals through the day seems to settle, the ups and downs a bit. Worth a go, all tips together might start to eleviate some of the symptoms. I will let you know about allergy test when they come back. x
Bluespots and Dolphin40 , i put something i read about 'pulse pressure' for monitoring thyroid hormone dose on here healthunlocked.com/thyroidu...
the other day , i haven't tried it, and don't know how the numbers mentioned might relate to children or not, but thought you both might be interested.
My daughter was diagnosed with SVT about 8 months before her Hashi diagnosis. She was put on Atenolol. Im always wondering if there is a stronger link between them eg has she been diagnosed/treated correctly. Her Paediatric who diagnosed her says they are separate but im not convinced.
That's close enough to be very 'interesting' isn't it . I know absolutely Zilch about heart probs or drugs, but i know NHS like to think of the body as separate unrelated parts, so i'd keep asking and reading about heart/ thyroid /drug connections if i were you ...wonder if the Doc's who wrote that GPoline piece are still around ?
I once got confidently told by a physio that my neck pain was 'not connected' to my back problem LOL....i thought about drawing them a picture of a skeleton , but managed to restrain myself.
A yes, resulting in an increase of REVERSE T3 ( T3 resistance), which makes the T3 ineffective, therefore stimulating the pituitary gland to request more T3.
As a precaution, look on here about diet and Hashimoto flares. I am in the process of battling this myself. Some things in the diet will exacerbate flare ups. She is so young, so must be children's diet. Certain things containing iodine etc can cause flare ups; because it sort of adds to the Levothyroxine meds. Other foods suppress thyroid function.
This could be a simple thing to help with symptoms and upset while the doctors are working there way through. This forum is wonderful; if you post a question about children's food and nutrition on here; there will be someone who knows the answer or who can direct you to correct information. All these little changes can really help.
Yes thank you. She is gluten and dairy free now. We are looking at avoiding soy now too. No iodine. I do think there is some food she’s still reacting to but not sure what, hence decision to remove soy now too. Im thinking of getting a food sensitivity/intolerance test.
Soy is awful, coconut milk works for me; as I am very sensitive to soy; always have been. Cheese is full of iodine that can set off problems when you are taking Leveothyroine. Has she had her allergen tests done. Mine have gone in post today. I have known for years I was intolerant of many foods, ( as a child, food was a battle for me not a pleasure. Parents and school thought I was a picky eater, turns out some foods actually made me ill. I have a list of ten really bad ones. I do not want to exclude anymore food types than I need to; so I have gone for tests. ( really to identify hidden things like extras such as such as palm oil or anything like that. For instance, broccoli, suppresses thyroid function ( not just a small piece, but if it builds a lot in the diet. Etc
Because she is so young obviously you DON"T want to exclude anything that you don't need to, as variety is good. Check out food lists for thyroid affecting foods. Tell your doctor about anything excluded from her diet and keep a diary. Don't let her know it is a big issue, you don't want to scare her or make her fearful of food.
My test results come back in ten days, lets see what they find; I can be her guinee pig. Mine is 101 allergens, which include food and objects and plants ( grass etc) I don't suffer from hay fever but my brother does. We are all different and it can vary over time.. I already know the biggies from life......Soy,,fish, seafood, mushrooms, Quorn, Brazil nuts but not other nuts. Other things have become an issue since thyroid kicked off, salt, iodine, cheese and certain ingredients in shop bought food, do not know which ( oils, sweeteners etc) I don't know which, hence the tests. I do not want to exclude any food stuffs that I don't need to. So much happens in the gut, 90% or so of immune system is in the gut; so very important for anything out of balance. Also FYI, children also have a thymus, which I have only just discovered. It is a kind of immune system in training, on top of thyroid that also regulates. Doctors know about this; but is an extra variable. Often with food, it is the amount of one thing rather than a complete allergic reaction. Also you can become intolerant and then it can ease over time. Don't over eliminate. They will have tested for Coeliac already, so she may be able to go back to what etc. Oats are a great food source to replace what and can be made into biscuits etc. Coconut milk was a great discovery for me. Now I alternate with cows milk to widen diet. !0 days and I will let you know what my tests come back as, and if it made any difference to my diet. I have thyroid autoimmune, so keeping my gut happy helps keep that calm too. x
Yes I have just sent off my 101, intolerance test, TODAY!!!! I don't want to exclude foods that I don't need to, varied diet is very important. I will let you know how tests come back, as an example of how it works.
Doctors are doing the BIG STUFF, you can help with the other stuff, allergens, not letting her get too tired etc. Everything is better with love and hugs
Could be if she is producing T3 resistance, RT3 would neutralise effect of T3. Don't panic. I would say, thinking how our NHS works in diagnosis; slightly different in other countries. They work by going through systematically, step by step eliminating possibities, takes a long time to go through the sequence. They always start by eliminating most serious or obvious things first, going down the list ( I am not a medical person, but lifelong illness has given me an insight into system). They have to look for obvious physical abnormalities first, ticking things of the list as they go. That is why it takes so long.
RT3 could result in high TSH and high T4. There could also be a problem of converting the T4 into T3, but she has some T3 so something is working.
rT3 can be a bit of a rabbit hole, i believe it has now been shown that it does not block to the T3 receptors inside the cells, (it uses different receptors on the outside if i remember correctly, for a different purpose) and so whilst rT3 testing is an indication of how much T4 is being turned into rT3, (and thus inactivated and ultimately recycled so the iodine can be used again) it is not an indication that T3 is not able to get into or be used by cells. T3 still gets into it's own receptor cells even when rT3 is high. If i understand it correctly, one of the deoidinases turns T4 into rT3 , but the other 2 deiodinase still turn T4 into T3 as needed.
rT3 is part of the normal regulating mechanism, and can be high for a multitude of reasons.
rT3 testing is also expensive , and getting overly worried about it is not likely to help with doctors taking you seriously.
Some websites still have not updated what they write on this subject, thus the idea is still around that rT3 'blocks' T3
There is balanced up to date information on the science-y-bits in numerous articles with helpful pictures ,on this thyroidpatients.ca/home/sit...
respected Canadian thyroid site if anyone needs to understand the cell receptors, and deiodinase actions.
I wasn't suggesting you tried to understand it, honest
Try and allow yourself to feel reassured now that they have referred her to somewhere proper. You've done a great job by pushing to get her there. We see so many rubbish doctor stories on here it can lead to feeling insecure in their hands, but it does seem to me that you are being taken seriously now.
There is nothing harder than watching your kids suffer, but kids are really fine at coping with physical difficulties and accepting things as they happen, and they do this best when they are given confidence that trusted adults are in control and you know what you're doing ...(even if you don't)
So perhaps you don't need to try and understand rT3 just now ....you've got enough on being mum and keeping the wheels turning smoothly. xx
That is complicated and beyond me. But if you could rule it out by a test ( just get a private one) It is one less complication to cross off the list. If it comes back negative, you know that T3 issues are not that. Things in you diet such as iodine can effect T3 production and make Levothyroxine less effective. She might have a good day and then eat something that suppresses the thyroid the next day, that would fluctuate how medicine was working. This will be lots of small changes adding up to an improved day to day wellness. See tests as ruling things out rather than a worry, thinking there is something else wrong. Information is your friend. Remember, I am just a patient, but now I understand tests are are a positive thing, helping me to get well. x
If you need more detailed info on Reverse T3, post a NEW full question on here. Their will be a boffin, better than me that can answer that. I am not an expert but can offer some pointers. x
One possibility is 'resistance to thyroid hormone' (RTH). This is a rare genetic condition of the 'TRB1' receptors. It presents with elevated thyroid hormones (fT3 and/or fT4) and a non-suppressed TSH (i.e. normal or high). These patients can either have little or no symptoms, symptoms of hypothyroidism or a mix of hyper / hypo symptoms.
To check out RTH an endocrinologist must contact the specilist clinic at Addenbrooke's Hospital in Cambridge for investigation. If the assay interference is ruled out and the endocrinologist does not think it is a pituitary adenoma then I would suggest they check this out. The endocrinologist should check other pituitary hormones just in case these are abnormal as well.
She has sent the bloods to Addenbrooke’s to check assay interference then she said she would go from there. Im not sure why Addenbrooke’s wouldn’t then just look into other things? Its very worrying
The biochemist at Addenbrooke’s (Dr David Halsall) is excellent but checking for assay interference may be done by a capable junior. As it’s going to Addenbrooke’s maybe your endocrinologist could ask them to request Prof. Chatterjee’s opinion if the assay results are correct. (I suspect the Prof will ask for the pituitary to be checked out first - this wouldn’t be a bad thing!). I’d keep the endocrinologist on their toes, ask what their plan of action is - it might prompt them to get a plan!
I would worry that my daughters Endo wouldn’t be too impressed and she has been the most proactive so far. Thank you though. Depending on what results come back and what is going to be done about it, i’ll email him then. I wonder if he takes referrals directly? NHS or private!
Given it looks like the results have been passed to one of Chatterjee’s team I’d hold off for now. The team is NHS only and as they are the UK centre of excellence for RTH they only take referrals from endocrinologists.
She’s part of the endocrine team and may well be able to help. I don’t know of her and we can’t discuss doctors on the forum but as a general comment it’s a prestigious team and likely to attract good candidates.
It really is this checklist they go down, ruling things out as they go. It looks like stalling but most of it is just their protocols; and it takes a long time. This does not mean that it is something bad, it is just how the system works.
Yes looked at this. I tested her for lactose intolerance and she isnt. Shes been on Eltroxin for 8 months. I haven’t changed as i was trying to get levels right on it but its just not working obviously x
It’s possible because RTH puts the thyroid under a lot of stress making it secrete beyond normal levels. This can cause it to fail or develop autoimmune thyroiditis and hence its secretion can become erratic.
It’s possible the high TSH is due to a pituitary problem but your daughter is showing some hypo symptoms which is inconsistent with a pituitary that is over stimulating.
The other possibility is the TSH assay is giving false results due to assay interference. diogenes is the expert on this, perhaps he could comment (the lab has been asked to check).
I have similar results and been waiting nearly two years for a diagnosis. The initial delays were largely because GP failed to look beyond high-normal TSH. I have since undergone imaging tests (CT and MRI).
My consultant has also referred me to Addenbrookes, but I’m still waiting for them to contact me! I had an MRI because of “abnormal thyroid tests in keeping with TSHoma”, but there was “no evidence of a pituitary lesion. This needs to be evaluated further”.
It may be that there is a genetic defect. I largely feel fine since taking propranolol, and have never taken Levo or any other thyroid treatment. Autoimmune thyroid tests were negative.
All this came to light when I was diagnosed with LADA diabetes, which is generally under control. I am in my fifties.
I remember reading one of your older posts about your daughter, so sorry you are both still having such a tough time. That TSH has a life of it's own, i hope no one is using it to adjust dose by, and are using FT4/3 results instead.
I'm glad you have access to all the brains on here , and really hope you get some answers from addenbrookes. Thank heavens she's got such a good mum x
Right- so presumably the next step would be a short synacthen test to check for Addisons? Have the blood cortisol results come back yet? I read some rather worrying things the other day about children going undiagnosed with Addisons for a long time.
Well, it’s certainly at the bottom of the range- what that means in terms of possible Addisons I don’t know I’m afraid. Could you look for Addison’s forums and ask there?
Who ordered the cortisol? Endo or GP? It might be worth just discussing the ‘low in range’ cortisol and low saliva cortisol with the Endo, you know how doctors can be with blood results being ‘fine’ even if they’re low in range
The simultaneous high values in everything strongly lead to assay interference in TSH testing. It is wellknown and is more common than one might think especially in autoimmune disease. The very high FT3 should have suppressed TSH to almost undetectable rather than the number found. So everything leads to a false TSH result.
Yes, it can happen every time until the offending substance is removed from the diet days prior to testing. Biotin, I believe, is a known culprit and can give false readings, such as high T4 if it's not taken into account at the lab.
Nausea and eating her also symptoms. Habits can vary depending on whats happening at the time eg a flare. However doesnt really like carbs but eats most veggies, lots of fruit, meat, chicken, eggs ....
Depends on the instrument and testing method details. It's not valuable to retest somewhere else if the method is the same or very similar. It is just the absolutely undiagnosable set of conflicting results that set alarm bells ringing. One might have thought of a resistance phenomenon had it not been for other more plausible results earlier. I don't think one suddenly gains resistance like this that would explain the results - it's usually a genetic phenomenon from the outset. In the circumstances I would forget TSH results and concentrate on getting FT4 and FT3 into the reference ranges, especially FT3. And of course on patient response.
What further testing would you recommend then pls?
Going by T4/T3 this time, she could do with a further reduction though but this last reduction has brought back hypo symptoms (as well as hyper though i really think shes having a hashi flare) She was much better on 37.5 though still having hair loss.
Also, on a higher dose her reference ranges were all over the place (posted above) sometimes high, sometimes low so its hard to know what dose she actually needs
I'm afraid the patient seems to be in a very unstable situation wrt thyroid function, if there is any left working. If testing snapshots vary so much from instant to instant, it's a case of trying to pin the tail on the donkey blindfold. Juggling T4/3 treatment seems the only way forward or (whisper it!) NDT. The latter because I believe the uptake of T4/3 to be gentler and less spiky than chemical T4/3 themselves.
Thats worrying about her thyroid. I thought she was early stages and didn’t think destruction would be that bad thats what others have said given her age. I guess only scans can determine this? I feel nobody is moving fast enough for her.
Automated immunoassays used to evaluate thyroid function are vulnerable to different types of interference that can affect clinical decisions. This review provides a detailed overview of the six main types of interference known to affect measurements of thyroid stimulating hormone (TSH), free thyroxine (T4) and free triiodothyronine (T3): macro-TSH, biotin, antistreptavidin antibodies, anti-ruthenium antibodies, thyroid hormone autoantibodies, and heterophilic antibodies. Because the prevalence of some of these conditions has been reported to approach 1% and the frequency of testing for thyroid dysfunction is important, the scale of the problem might be tremendous. Potential interferences in thyroid function testing should always be suspected whenever clinical or biochemical discrepancies arise. Their identification usually relies on additional laboratory tests, including assay method comparison, dilution procedures, blocking reagents studies, and polyethylene glycol precipitation. Based on the pattern of thyroid function test alterations, to screen for the six aforementioned types of interference, we propose a detection algorithm, which should facilitate their identification in clinical practice. The review also evaluates the clinical impact of thyroid interference on immunoassays. On review of reported data from more than 150 patients, we found that ≥50% of documented thyroid interferences led to misdiagnosis and/or inappropriate management, including prescription of an unnecessary treatment (with adverse effects in some situations), inappropriate suppression or modification of an ongoing treatment, or use of unnecessary complementary tests such as an I123 thyroid scan. Strong interaction between the clinician and the laboratory is necessary to avoid such pitfalls.
Monitor potential Lupus through urine samples to check kidneys. I thought more should be done but it was referred to a rheumatologist who advised this 🤨
My rheumatologist regularly checks ANA and various other tests designed for lupus, ctd and other associated disorders. The only reason I do not have a definitive lupus diagnosis is that I do not have all the required boxes ticked off on the symptom list. Kidney function clan be monitored by urine tests to see if protein and albumin are leaking out, but a kidney function blood test would give a far more comprehensive picture. I am sorry that your endo does not seem to see the wider picture here, or think outside the box, as I would venture to suggest there is far more at play than the thyroid. I do hope you find some answers soon, as this must be extremely worrying for you.
Hey Dolphin40, I am a newly diagnosed patient of hashimoto's so I cannot go into detail about that however being just 37 and am almost 21 years in with MS, Lymes's several years longer, history of incidental found near rupturing brain aneurysm, some IBS-C etc. I also felt you should ask if not demand for MRI just to look at an even larger picture as well as ruling other things out. Cannot hurt !?! Also whenever you're feeling something in your gut whether the Dr. blows it off stand your ground and pursue it. I've found YOU really need to be your own advocate and be heard with some Dr.'s! Continue fighting and be heard girl. Good Luck and my best to you and especially your daughter.🥰
I looked up Dr Schoenmakers. She is a specialist in congenital hypothyroidism and RTH at Addenbrooke's. She also works at Great Ormond Street, so she is a paediatric endocrinologist. Addenbrooke's has a regional blood testing facility that works closely with the endocrinologists and also carries out specialist genetic tests for RTH. The are two major RTH centres of excellence in the World, they are based at Chicago and Addenbrooke's.
So, as far as checking her blood tests for assay interference, checking for RTH and having a high flying paediatric endocrinologist all three boxes are ticked. I think your daughter is getting the very best attention at the moment so I would be relieved and sit back and wait to see what the Addenbrooke's team come up with.
As patients it's easy for us to speculate and make suggestions but doctors have to be more thorough and careful. I'm all for giving doctors a chance and then making suggestions if they can't come up with an answer. I suspect your daughter's endocrinologist has some suspicions that may be beyond their expertise and they don't want to admit it, so they referred on. Doctors seem to be trained to put across an aura of confidence and certainty, it appears to be part of their training. I prefer doctors who simply say they don't understand. The main thing is that there seems to be some action and she is receiving the best care at the moment.
Let us know how the Addenbrooke's consultation goes.
Yes, thanks for this great reassurance. Her Endo now has been very proactive and wants to do things logically. I feel lucky it is her we have looking after my daughter tbh. Im just impatient as its been 9 months and just want answers as my daughter is really struggling. I hope it can all become clearer soon. Thank you very much!
Sounds like you've got the right specialists looking at this now. It's complicated by the ANA antibodies. Investigations do take time but sounds like you're on the right pathway now.
ANA are autoimmune markers and generally my non medical experience of autoimmune conditions are that they develop slowly and are lifelong. NHS is generally responsive when it's critical or urgent care. Many times people have to find ways to manage chronic autoimmune conditions with nutrition, sleep, exercise as they learn how their particular body responds. So, I wouldn't panic. Let the doctors do their bit to work out the inconsistency in thyroid levels and then you'll be able to work with them on other factors. One step at a time.
Hi, thank you! Really? Who suggested that to you? Im interested because my daughter has the MTHFR Gene. Her FD said her results showed she would find it very hard to methylate folate which in turn affects the B’s. She was recommended a methyl B Conplex?
The suggestion came via an endocrinologist's registrar, just in passing, after I had already begun to self-treat. You can google about B12 damage to the pituitary. Here's a quick summary:
I also have several gene snps (mtrr for e.g. as well as mthfr) which make it impossible to use and recycle B12 and others genetics which impact folate. I also have pernicious anaemia.
I have to use high-dose methylcobalmin via injection. Cyanocobalamin or Hydroxocobalamin make me much worse, as does folic acid. I'm unfortunate as well in that I cannot use folinic acid (in vegetables). I can only eat a small amount of veg (especially high folic acid veg) and I have to take methylfolate along with it because folic acid or folinic acid blocks my folate receptors. I am one of the rarer ones, your daughter may not be so compromised. But she probably should avoid folic acid supplements given her genetics.
You probably know that folic acid in supplement form is synthetic. The body will convert it into methylfolate through a series of steps for use by the cells. A good thing, among others, about taking methylfolate, is that it doesn't build up in the liver whereas folic acid can.
For me oral or sublingual methylcobalamin (B12) isn't enough. It has to be injection. I use sublingual methylcobalamin sometimes for a top-up, but oral is useless for me. The best sublingual I have found is Enzymatic Therapy b12. I get it on iHerb.
For the folate I use Metafolin by Solgar (it's methylfolate). I also like Methylpro brand of methylfolate - no additives or exipients. Again, your daughter may be ok with sublingual B12 for example and a small dose of methylfolate. I, like my father, have very rare genetic issues around b12 and folate.
I'm giving you all the details now, in case they're of use, because I may not be around here much. There's a lot going on with my husband's health now.
I lost decades of my life to b12 and folate deficiency misdiagnosed as 'ME' and 'Fibromyalgia'. Your daughter is lucky to have you. My mother said I was a 'malingerer'. In later years she developed pernicious anaemia and was given an injection once every 3 months. She went on to develop dementia in her late 60s.
I ended up housebound and then bed-bound in agony all over, profoundly weak, hardly able to get to the loo without assistance, memory failing and losing my word recall, and now after 4 years of the above self-treatment I can go for short walks (it's a slow recovery) and do normal housework and work from my laptop. Thankfully no problems with memory or word recall or the multiple neurological deficits I had.
Im so sad to hear this. I cant believe you had to go through all that, being wrongly diagnosed. Its just not right and really scary Its good you know yourself so well though .......
Was it all through genetic testing, you found out? I know a little about folic acid or rather, that it should be avoided . She doesn’t take any in supplement form but she should avoid foods with it?
Once your were optimal on B levels, did this help your thyroid levels normalise then?
She may not be nearly as bad as me re avoiding foods with folic. I'd hate to advise someone to avoid any natural food nutrients. I do take small amounts of folic containing foods as long as I take 5mg of methylfolate with it, a few time per week, any more and the folic blocks my methylfolate.
It's all trial and error really. Maybe try her on small dose of methylfolate - it's harmless, any excess is peed out, unlike folic acid which accumulates - for someone with her issues. She shouldn't take folate (methylfolate) without B12 (methylb12 in her case). In my case, drops didn't do anything. It had to injections and some sublingual B12 in between. B12 needs adequate folate and iron to work properly. She may not get adequate folate from folic or folinic as it's called, from food.
Getting replete with folate as well as B12 is what fixed my thyroid - for the first time in decades it normalised, i.e. I responded to thyroid meds and tsh normalised. If I'd had folate and B12 to begin with, my thyroid may never have malfunctioned, but once you continue thyroid meds you're stuck with them. Do be aware that lack of folate in a useable form for her can cause damage at cellular level so that many tissues become damaged over time.
Thanks for kind wishes. Best of luck.
PS
It was a combination of genetic testing and reading and trial and error.
You needn't worry about safety of methylfolate or methylcobalamin as they are the forms the body converts food into and excess is naturally excreted.
I should say some people convert methylcobalamin into enough adenyscobalamin (dibencozide). Some, like me, need a weekly dose of dibencozide (I use 10mg sublingually). For those who are lucky enough to be able to use hydroxocobalamin, then that will provide adensycobalamin (dibencozide) as well. But people with mthfr need methylcobalamin (and adenyscobalamin).
It sounds overwhelming at first, but once you get used the long names, it's not difficult to get going. Best of luck.
I mistakenly deleted more details. If you decide to go down the methylfolate/methylcobalamin route feel free to message me. I'm more likely to see the notification.
Im not sure if this will get to all of you amazing people who helped me before regarding my daughter, so im going to put it in a separate post too ......
So i got the call from GOSH today and the Endo said Addenbrookes did find assay interference with my daughter’s T4 and T3 results (read higher than they actually are) but that the TSH was correct. She has therefore suggested treating her based on her TSH and increasing her dose of thyroxine back up to 37.5. I don’t have the exact ranges of the sample sent to Addenbrookes but it was something like;
TSH 22
FT4 14 (9-22)
FT3 5.4 (5-7)
She also advised Addenbrookes have said they will test for RTH and she walk get a cardiologist to review this SVT diagnosis my daughter got 8 months prior to her Hashimotos diagnosis.
Her Endo said she doesn’t need T3, NDT and advised that thyroxine was her only option. She also said she doesn’t need an MRI or her Pituitary checked .
My concerns/queries are .....
1. Will she always have assay interference then, making it difficult to know what are T4/T3 levels are?
2. Could this alone explain the erratic levels since March? Im not convinced. There were suggestions from people on here that her TSH could have assay interference but I hadn’t heard the T4/T3 could. Is this not too common? Why/how does it happen?
3. Would you still suggest arranging an MRI/checking pituitary and if so does anyone know where you can do this in the UK for children?
4. Im conflicted whether or not to increase her Eltroxin. She was better on 37.5 but her hair loss was awful. She also had hyper symptoms. We have a functional dr who advised Eltroxin was not working for her and that we should try something else eg NDT. Its difficult when you have 2 fantastic practitioners but they differ completely regarding treatment.
We have recently had tests back we did privately and my daughter was found to have mold toxins in her body as well as possible infections which could have triggered this autoimmune response.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
). One would expect the Levo to be dampening down the TSH far more than it is—but it isn’t. It’s like the TSH is running independently to the usual bio-feedback mechanism, which is what got me wondering about a pituitary problem. 
Latest results on T4 \T3 combo . TSH high ??
High TSH and High T4
High T4, high T3, high TSH- suggestions?!
High TSH, Normal T3 T4 Help
Children's TSH T3 T4
