Wondering why no one responded to this post

[Noelnoel]

Well someone asked a question then disappeared

I sent the list below yesterday and one person asked a question then didn’t get back to me. If it’s because I’m asking for advice on a friend’s behalf can you just let me know out of courtesy please

She plans to join but is away for the next two weeks. She forward me her test results a and asked me to do this for her. If it is preferred that she contacts you herself I’ll let her know and perhaps she’ll join sooner rather than later

I have my thoughts but would rather she saw what the knowledgeable folk on here have to say

I’ve been suggesting for some weeks now that she get herself tested and amongst others (full blood count and fasting glucose) here are a few of the results. Unfortunately, at this stage there’s no iron panel studies

Ferritin 19.4 (10-291)

B12 488 (211-911)

Folate > 24 (> 5.38)

D3 52.2 nmol/L

Magnesium 0.82 (0.7-1.0) she supplements with this

Haemoglobin 139 (120-156)

TSH 6.89 (0.35-5.5)

FT3 5.5 (3.5-6.5)

FT4 16.8 (10.5-21.0)

TPOab < 28 (0-60.0)

She’ll post other details on joining if required but for the purposes of getting an idea what her thyroid gland is doing I’ve listed the most relevant and wondered what your thoughts are. I find the relationship between the over range TSH and corresponding FT3 and 4 response, curious. I know the purpose TSH but the numbers are interesting

I will forward any responses for her to read and interpret herself rather than my version of what is said

Your opinions would be appreciated

Thank you

[Lalatoot]

The reason I asked the question was to add that information to your post as folks like to know if the person (and it being a friend rather than you isn't important) has been diagnosed with thyroid problems already. The reason that I didn't get back to you was that I have nothing to add or suggest. I have no ideas about those result - if your friend had already been on thyroid meds however I would have made suggestions about doses.

Hope someone replies today.

[Noelnoel in reply to Lalatoot]

Thank Lalatoot for making that clear. It makes sense now

[greygoose]

Well, her TSH is saying hypo, but her Frees aren't bad - especially the FT3. Problem is, it's unlikely that any NHS doctor would diagnose on those results, because they like the TSH to go over 10. But, it could be that her thyroid is failing and the thyroid is working extra T3 to keep her going. Time will tell. Is this her first thyroid blood test?

The main problem there, is that her ferritin is way too low. But, I expect she knows that if she's having an iron panel done. And, I would like my B12 higher than that, personally, at least over 550.

Her antibodies are suggesting she doesn't have Hashi's, but can't prove it. Antibodies fluctuate so one negative test is not conclusive. Also, there are two Hashi's antibodies and only one has been tested. And, to cap it off, 20% of Hashi's people never have raised antibodies, anyway. A prime example of not being able to prove a negative.

[Noelnoel in reply to greygoose]

Thank you greygoose, I’ll pass this on. Unfortunately. She’s not having iron panel studies, she just had the basic full blood count which doesn’t show saturation, transferrin etc

No, it’s not her first test.T4 was tested 14 years ago which was borderline and then a “follow up” 4 years later! This came back as low and out of range. She heard nothing about it and was unaware this was a problem until she mentioned it to me

So does she really have to wait to see and in the meantime have havoc wreaked on her?!!

[greygoose in reply to Noelnoel]

I don't see what else she can do. As I said, no doctor is going to diagnose her and treat her with those results. Besides, at the moment, her FT3 - the active hormone - is good, so not much havoc is going to be wreaked. I'm not a doctor - and probably good job I'm not, because I can give an unbiased opinion - but she really needs to just keep testing and see how things pan out.

However, something really, really ought to be done about that ferritin - an iron panel at the very least. Because that could be causing symptoms. Has she had her vit D tested?

[Noelnoel in reply to greygoose]

Thank you. Yes, vit d is 52.2nmol/L

I agree with you about the iron panel studies. I urged her to ask for it but by then she’d been asking for so much (at my suggestion) she said she’d leave it for another time. Will nudge her again when she gets back

[greygoose in reply to Noelnoel]

Well, that vit d is rather low, too. Is she supplementing it and taking vit K2-MK7 with it?

[Noelnoel]

That I don’t know. I know she’s taking various other supplements

I’ve sent her your first response and will ask her when she replies but I hope she joins soon because there’s so much she can learn from you and others too

[tattybogle]

I was diagnosed /treated with TSH at 6.8 however i suspect it was largely due to TPOab 's being >3000 so that confirmed autoimmune cause even though TSH wasn't very high. At that point my TotalT4 was 30 % through the range, (don't know what fT4 was, but probably a bit lower)

Her fT4/3 are both pretty decent on that test, but that could be because initially when thyroid is struggling it tries it's best to increase T3 to compensate.

So i'd keep checking at intervals in the future to see what's going on.

I'd also want to know exactly what previous results she had.

In the meantime i'd work on the other things like ferritin/B12.

But no GP will be interested in thyroid yet due to lack of TPOab and currently decent looking fT4/3.

Getting results that show a clear rise in TSH and fall in fT4 over time would be more persuasive. My TSH was 5.7 followed by 6.8 just 6 weeks later and TT4 fell from 94[65-155] to 91, so that probably helped too. But mostly it was the antibodies that decided it in my case.

4yr follow up !?..... for crying out loud..

[Noelnoel in reply to tattybogle]

That’s a very high TPO! Thank you tattybogle, I agree with what you say

Any idea how to copy and paste all this to forward to her. Doesn’t seem possible or else I’m doing something wrong

[tattybogle in reply to Noelnoel]

sadly my 'tech skills' stop at "move pointer and click to see what happens" , I can only post links here because SeasideSusie showed me how, and even then i needed a small child to help

If it's any reassurance to your friend.. even though my TSH wasn't very high, i'd felt increasingly crap for 4 yrs by that point, and it had a substantial impact on my ability to work/have fun. So even though she's not got the required 'bad' results (yet) that doesn't to me at least rule out thyroid as being a problem here. But you have to allow for temporary fluctuations in TSH /f/t4 that are to do with other causes, and you don't want someone on replacement hormones if they didn't need to be, and if you do start treatment with 'OK' reults you will forever have Doctors questioning the original diagnosis... and it's hard enough to get taken seriously even if you do have an undisputable diagnosis ... i'm extremely glad i got those TPOab results ,GP wasn't interested at all ,until he saw the first which was 2499 and started Levo, then unknown to me at the time he repeated it 3 months later, probably to check it wasn't a mistake and got >3000 .

But my point is, i had no thyroid tests done for the 4/5 yrs previous, when i felt dreadful, and so i do wonder if there would have been points during that period where my TSH would have only been about 3/4/5 ish and i may not have had any spectacular antibodies either, but that didn't mean i wasn't suffering horribly, and it didn't rule out thyroid as the problem, because clearly it was.

P.s i saw your post yesterday and just thought "ugh ... i don't want to have to be the one to say No Doctor will be interested yet"... because we all know how depressing it feels to hear that, and we all know that 6.8 is not usual for healthy people. and i'm not so good on vitamins etc.. so i bravely walked on by .... sorry xx

[Noelnoel in reply to tattybogle]

That really is ok tb, I quite understand. Thank you for your input today though. All thoughts and responses are welcome

[london81]

people are on here in their spare time, there are no paid staff, so it’s understandable that people can’t always reply. it’s good to remember that. since i joined 7 years ago the membership has sky rocketed, and admin on here do their best to reply to everyone but it’s very hard.

[Noelnoel in reply to london81]

Yes london81, you’re right and I do so appreciate their input

[london81 in reply to Noelnoel]

It’s sometimes frustrating waiting for a reply when we are worried ( and you are such a good friend). i post for my daughter and dad, and myself, and when i get advice it’s spot on, but at times i remind myself these people are replying for free when doctors charged 200/300£ an hour privately!good luck for your friend i hope she joins and reads around the issues!

[Noelnoel in reply to london81]

And even after paying all that it can leave you feeling as though you haven’t had the best advice so yes, these people on here are invaluable. They’ve helped me so much and I too ask advice for my son and husband. Thank you for reminding me to be more grateful and patient

[london81 in reply to Noelnoel]

that’s ok because in reminding you I reminded myself ( you know that expression- if you spot it you have got it ha ha)

good luck!

[SlowDragon Ambassador]

I would recommend working on improving low vitamin levels

Optimal vitamin levels are

Vitamin D at least around 80nmol and around 100nmol maybe better

Folate and ferritin at least half way through range

B12 at least over 500

Don’t start all supplements at once ....add one at a time and wait 2 weeks before adding the next

Start with vitamin D

Then good quality vitamin B complex with folate in

Meanwhile increasing iron rich foods in diet

Look at getting full iron panel test done via Medichecks

Getting FULL thyroid and vitamins tested again in 3-4 months via Medichecks or Blue horizon

Make sure to test as early as possible in morning before eating or drinking anything other than water

Stop vitamin B complex week before test

[Noelnoel in reply to SlowDragon]

Thank you SlowDragon at the moment I’m photographing and emailing the replies as I can’t seem to make copy and paste work. Any ideas?

[SlowDragon Ambassador in reply to Noelnoel]

Just right click a send her link to website

[Noelnoel]

Thank you SlowDragon, I will let her know what you all say but at the moment I’m photographing the responses and emailing them. Can’t seem to make copy and paste work. Any ideas?

[DippyDame in reply to Noelnoel]

Click at the start of what you wish to copy and blue pointers will appear( sometimes doesn't happen immediately, or first time! ) drag the second blue pointer over the script you wish to copy. Pause until the option bar appears, then click on 'copy'.To paste, click on screen, option bar will appear, then click on paste.

Hope that works for you

[Noelnoel in reply to DippyDame]

Thank you DD, that’s what I always do but it doesn’t seem to work here. Have a go to see if you can make it work

[DippyDame in reply to Noelnoel]

I tested it before I posted to you , it was fine.

[Noelnoel in reply to DippyDame]

Thanks. Don’t know what I’m doing wrong but it just won’t work here. Have tried it elsewhere to check that it’s not just me and it doesn’t appear to be because it works in other settings. Thanks for trying though