Daughter still poorly

[Dolphin40]

Hello there,

Some of you may remember me discussing my young daughter and iv had such great feedback previously, im hoping you can help me again. Il try and list things to make it easier to read ..... its been a year now and my now 7 year old is no better off - worse if anything 😞

Symptoms past/present include anxiety, brain fog, massive hair loss (only since starting thyroxine), no weight gain (Shes skinny and on the 1st centile for weight) bruising easily, constant tummy pains, nausea, hyper at times, mood swings, poor balance, fatigue etc

Diagnosed with SVT nearly x2 years ago.

Diagnosed with Hashimotos and started Eltroxin x1 year ago.

Lost 3/4 hair since starting Eltroxin.

Tummy pains have gradually got more frequent/worse.

Under Great Ormond Street Hospital and the Endo has said ‘the thyroid problems are secondary to something else but she can’t work out what’

Have had loads of tests through NHS and private in search of root causes. Including vitamins/minerals, stool, food intolerance, Methylation, Iron, Cortisol, OATS and many more .....

Have a functional practitioner supporting her.

Has tested positive for mycotoxins and Lymes/Co infections

Thyroid levels have never made sense with her TSH going up in addition to her FT3 and FT4.

Referred to Addenbrooke’s to check assay interference which confirmed her TSH is correct but her T4 and T3 have interference from antibodies. They do not know from what but from their 1 test they did, her levels are a lot lower than what they read when tested locally/GOSH/finger prick.

DNA to test RTH was taken 5 months ago by Addenbrooke’s and we still do not have the results. GOSH has been chasing 🤷🏻‍♀️

She is on 37.5 thyroxine with a TSH sitting at around 6 (GOSH did not want to increase and said this was fine) but yesterday her results showed an increase to 10. Her T4 and T3 also increased 🤷🏻‍♀️

I requested we try Tirosint but GOSH suggesting we change to a liquid version of Levothyroxine and dose at 40?

Discussed T3/NDT etc previously with all involved but GOSH saying no.

Apparently she is converting to T3 fine 🤷🏻‍♀️

Hair loss and tummy problems very significant at present.

We are so desperate to help her. Its heartbreaking watching her suffer and she asks all the time why her tummy hurts and why she can’t do things her friends can do etc .....

Any help/advice would be greatly appreciated. I just don’t know what else to do to help find out what’s going on 😞

Thank you

[tattybogle]

Hi Dolphin40, yes i remember your previous posts, and so sorry to hear your little girl is struggling so much .. its so unfair , and must be breaking your heart.

I'd give the liquid Levo a try , i have seen some people on here who have done well on it after loads of struggles with Levo.

TSH rising does seem to indicate need for increased dose , i don't know how well absorption from liquid doses equates to the absorption from tablet forms , but i think i remember that some people needed less when moved to liquid , so it seems possible that 40 liquid could actually result in a bigger increase than it first seems by just looking at the difference between 37.5 and 40

Hopefully some smarter people than me will be along soon.,...or somebody with experience of liquid levo.

In the meantime ,sending some hope for a better outcome soon xx

[Dolphin40 in reply to tattybogle]

Thank you xx

[Bluespots]

Oh Dolphin 40, I am so sorry she is going through so much. The Endos seem to be working hard on the problem. My heart goes out to you. I have Hashis and it is horrible, but then I am not just seven years old. You have done all the food elimination, addition of lots of fruit and veg with everything helped my Has his; perhaps in a smoothy. The Lyme test is significant I think......are Endos perusing that line of enquiry also ? Have doctors suggested

[Dolphin40 in reply to Bluespots]

They are but i have heard NHS testing is not as advanced as the one i did (Armin) and they look for it in the blood and it cannot be found there hence why NHS tests for Lymes often come back negative when it’s actually positive. At least they can put it to the side (while i treat her privately) though and carry on looking for whats going on 🤷🏻‍♀️ Xx

[Bluespots in reply to Dolphin40]

So that you are getting the backup private tests done, literally saved my life. I do share my tests with doctors, shifts there viewpoint slightly when it comes to asking for treatment. I do not know if it is the same with children in NHS.....when I showed my GP very high antibody test for Hashis, my GP tole me NHS does not actually treat Hasis only the loss of thyroid hormone. I suggested to GP, whether or not was important everyone new tests to understand what was going on......and so I could self care. Writ to Dicksons,Glasgow. Transformed my life, also they deal with lots of other Hashis patients from all over UK, so they have insights. They might have other children with autoimmune on their books. x

[Dolphin40 in reply to Bluespots]

Yes, dicksons have sent me meds previously. Which one are you suggesting, the pharmacy or isn’t there something else? as i rang the wrong one in the past. Thanks x

[Bluespots in reply to Dolphin40]

Dicksons pharmacy

[Bluespots in reply to Bluespots]

........probiotic to help absorption of vitamins, meds etc ? Can I ask, is your little girl's hair is going at the hairline, which would most probs lack of thyroid hormone. She is really struggling to absorb meds and vits. Diary etc free probiotic helps me with my tummy. Also coconut based yoghurt (KOKO) sorry for brand name but only one I have found that dose not have other stuff in. The Lyme thing really is significant....more investigation needed on that from docs.....it's a bit out there, but has anyone suggested Anti Viral meds. Update on my Hashis treatment.....new medicine privately from Glasgow Chemist; LDN. Improved Hashi symptoms no end, but can make you very sleepy. Have no idea if appropriate for youngsters. Worth sending and email with all of this to Dicksons Chemists in Glasgow via email.....with full med history for them to review if any other treatment possible. Then you could suggest to Endo. They are still really looking for the cause and giving holding treatment while they find answers. She is checked for VIT D and supplemented I presume. If hair line hair loss it is most likely Has his and is a sign that meds, vits etc are not correct yet. My thoughts are with you and your little Orchid.x

[Dolphin40 in reply to Bluespots]

Thank you.Yes, hairline but all over thinning. Back, scalp - everywhere.

Yes, she is on LDN already 👍🏻 takes probiotics and coconut yoghurt 😊

Takes Vitamin D

I have discussed anti virals with FD but we are not there yet. Im worried about starting them and prefer more natural herbs/tinctures first xx

[Bluespots in reply to Dolphin40]

Years ago, I was concerned how natural treatments were. To be honest, now, I just want to be less ill. With Hashis we are allergic to natural stuff just as much as anything else. We are allergic to ourselves. My feelings that anything to calm down that over reaction is going to give us more chance in the future. Of course it can take months for hair to recover even after treatment......my heart goes out to her; I am a grown woman and it is bad enough. Has the LDN improved her tummy pain at all......almost immediate with me. I understand that the Docs want to go slow and steady but it must be truly awful for you, waiting for answers. I can only imagine that her tummy is taking a long time to recover. Thinking of you both and keeping all my fingers and toes crossed. x

[Bluespots in reply to Bluespots]

Have you had private Lymes tests done? I know from a friend that had it......you need to really have treatment before feeling well again. Let us hope it is a blip and she does not have LYmes issues. How would she have come into contact with ticks ? Are there any other conditions that test positive for Lymes? At least now you seem to be a little more secure with her Endo. x

[Dolphin40 in reply to Bluespots]

Yes there are ticks here unfortunately and we did the Armin test xx

[Dolphin40 in reply to Bluespots]

Thanks.

No unfortunately the LDN isn’t helping her tummy problems xx

[Mistydeb01]

Hi dolphin40

So sorry your daughter is not feeling any better 🙁

I think the Lyme is significant and severely under estimated/ treated in the uk. In case you are not in touch with a Lyme group to give you some pointers, there is a Lyme Facebook group that is very helpful with the types of bacteria with Lyme and co infections, tests, medicines, natural pathways etc. It’s called LDUK online community, is a private group and linked to Lyme disease UK.

I hope she gets some relief soon, it must be heartbreaking to see her suffering so much.

Debbie x

[Dolphin40 in reply to Mistydeb01]

Thank you.

Yes i am part of these groups xx

[jimh111]

So sorry things are not improving. I think the Addenbrooke's genetic test is cruical to rule it out. I know they are busy but they should be sorting out their priorities. I would contact your MP and point out how bad your daughter is and that you have waited five months so far for a vital blood test result. If posssible set up a video call with your MP and possibly with your daughter so they can see her. If an MP directly (and bluntly) contacts Addenbrooke's they might get off their backsides. If this fails you could try contacting the local press in the Cambridge area, if you feel you would want to.

I'd avoid too many interventions, I really don't think this is related to minor nutritional deficiencies. I feel an agressive methodical approach is needed. I also feel Addenbrooke's needs to be 'incentivised' to move.

[Dolphin40 in reply to jimh111]

Thank you!

What kind of approach?

I was hoping id get a lot more answers here. Is there a way to highlight the post again?

I know there are people on here who are experienced with the assay interference/antibodies that I was really hoping to get help from?

[jimh111 in reply to Dolphin40]

I think a methodical process of elimination starting with genetic testing for resistance to thyroid hormone. Although rare it seems the most likely cause.

[JAmanda]

I am no expert at all but surely working on getting her tsh to 1 or less and T3 high in range should be a priority? I am certainly more well having eventually got my tsh down and my T3 level high in range. I’ve got nails for the first time in my life and pains gone in my hips… Your daughter may have a complex mix of issues but sorting the thyroid ought be a massive help as it gives so many varied symptoms. X