It has been a difficult and quite dramatic 4 months, what with coeliac then AKI. But look at me now.

[nellie237]

The Most Important thing I have learnt from this forum is to get hold of your blood results. It has been eye opening.

Bloods

Hashi's since 2007 with TPO 633

Thus 08/04/21 TFT Results

TSH 0.13 (0.55 - 4.78)mu/L.................................T4 19.1 (11.5 - 22.7) pmol/L

Blood draw about 9:30am on empty stomach. Levo 125mcg not taken until after. PPI's stopped early March.

I'm happy enough with these results for now.

Results 08/01/21

TSH 0.84 (0.55 - 4.78)mu/L.................................T4 21 (11.5 - 22.7) pmol/L

Taken about 2pm. Levo 125mcg taken that morning. Also still on Lansoprazole. No supplements. N.B. I'd had a reduction from 150mcg to 125mcg 8 wks prior to these.

Ferritin 15 (10 - 291) ug/L

Folate 2.3 (3.4 - 12,2) ug/L

B12 281 (211 - 911) ng/L

Vit D 22 (the usual)

Those are dire, but..........look below

Thursday's results (08/04/21)

Ferritin 69 (Iron tablets stopped 7 days before test)

Folate 18 (Finished 8 wk course 5mg folic acid on 26/03/21)

B12 1796 (Last B12 jab 22/03/21)

Vit D 88 (I only did 5 out of 7 wks loading 40,000iu per wk, stopped mid Feb - at that point my gut couldn't cope with Iron tablets and Vit. AKI not the coeliac was the problem)

I am so thrilled with these results I can't tell you. I'd been running on fumes for years.

I expected to be struggling to get Iron up for a year. My ferritin has never been over 24, and I eat quite a bit of red meat. I think I'll be safe to continue 2 tablets per week, instead of the 14 then get re-tested in 3 months to see where I am and work out where to go from there.

Folate over range - that's new for me - glad its got a short shelf life. Folate has never been above 3.6 before and that was 2 months after finishing a 4 month course of 5mg F Acid .

I've ordered Igennus Super B, but will only take 1 per day for the next 3 months before re-testing. That covers me for B12 too.

Vitamin D, Grassroots tell me that to reach my target of 100, I need 2000iu per day for 3 months. Although out of curiosity I put in my January result and dose (approx 5700iu per day) and my target of 88, and the calculation was that I needed 10,000iu per day to reach my target of 88.........so I might only need 1000iu per day which is great.

[SlowDragon Administrator]

Brilliant.....well done

I imagine you feel significantly improved

[nellie237 in reply to SlowDragon]

Yeah, just a bit😀

[Yeswithasmile]

Hi Nellie

👏🏻👏🏻👏🏻👏🏻 Glad to read such a positive post 😀.

I note you haven’t got your t3 results but what I’d really like to know is.... how do you feel?

You’ve obviously worked very hard on everything but you haven’t put what improvement to your symptoms you have felt so can you let me know? Unless I’m missing a post that is.

[nellie237 in reply to Yeswithasmile]

Hi Yeswithasmile,

These are NHS results. I've only ever had 1 T3 result, and that was only because my TSH at the time was 0.09. T3 is something I may consider in the future, but if I do it will be when I have been stable for some time, and I'm not there yet.

Oooh, how do I feel - good question, and something I should consider more. I have never really felt well since dx. There are quite a few people who feel so crap they stop their Levo completely and then feel great for a week or so. I didn't do that, but I did forget to take my Levo a couple of times years ago and one day realised that I'd felt better than I had in years. Sadly, I don't think that works 13yrs after dx.

How do I feel now, by comparison to 4 months ago - that is a massive change. I have much more energy, my cognitive and memory function has improved drastically, vision has improved. I don't feel nauseous all the time. I still have cold hands and feet, but carpal tunnel has improved (I don't notice it now). I don't always sleep well which is a real pain, and is probably the only thing that has not improved.

[SlowDragon Administrator in reply to nellie237]

Poor sleep can be low Ft3....so in few months you want to do FULL thyroid and vitamin testing privately

As coeliac on levothyroxine, you’re likely to need addition of small doses of T3 prescribed alongside levothyroxine

[nellie237 in reply to SlowDragon]

I think my next thing might be another reduction in Levo in a few months. 100mcg fits with my weight of 59kg.

[SlowDragon Administrator in reply to nellie237]

There are quite a few people who feel so crap they stop their Levo completely and then feel great for a week or so.

Oh yes....been there.......Definitely got that T shirt.

It’s very misleading that short window of feeling better if levothyroxine stopped

Even did it 3 times! ( over 20 years ago)

1st time felt better ....then mildly crashed 2 weeks later

Year later .....did it again ....after 10 days became extremely unwell and took 3-4 months to recover

Roughly year after that (still only on 75mcg levothyroxine so no wonder felt so dire) ........I stopped levothyroxine again. After 10 days, so unwell, bedbound, couldn’t eat, walk, in wheelchair for weeks after. Tested for pituitary tumour, MS, MND etc etc.....Took well over year to recover....and further 20 plus years to get diagnosed as severely gluten intolerant in 2016 (after joining the forum and seeing just how common gluten intolerance and Hashimoto’s go together)

Was utterly astonished to discover I was gluten intolerant, (zero gut symptoms) and multiple vitamin deficiencies

Full recovery on levothyroxine plus T3, strictly gluten free and ongoing vitamin supplements to maintain optimal vitamin levels. Confirmed as heterozygous Dio2 gene variation. T3 prescribed on NHS.

[nellie237 in reply to SlowDragon]

After I realised, I only ever stopped Levo for the odd day lol- (and there's no doubt it works). eg If I had an important meeting at work. There must be a 'window' where you can do this - I was probably on about 75mcg at the time.

I look back now and think you stupid idiot - you should have used that for fun - not work.

I think that there are more and more people being diagnosed coeliac without gut symptoms, but with gut damage either presenting with deficiencies like you, or with neurological symptoms. Have you seen the Sheffield University/Coeliac UK stuff on you tube about neurological damage both with coeliac and ncgs?

[SlowDragon Administrator in reply to nellie237]

No ...I will take a look

I have to say gastroenterologist was brilliant, he was by far the most open to looking at the WHOLE person

He suggested thyroid disease being the CAUSE of gluten intolerance (or gluten intolerance/leaky gut causing autoimmune diseases)

[nellie237 in reply to SlowDragon]

Wow, you got really lucky with the Gastro. I can see his point - get 1 autoimmune problem = likely to get another.

[waveylines in reply to nellie237]

Thanks Nellie. No Ive not seen it. Will have a look -thanks unless you have a link? Its the Sheffied team am waiting to see. Am lucky they are based at my local hospital. Ive read Dr Sanders book.

[nellie237 in reply to waveylines]

Sorry, I can't find it now..........it was fairly recent.

I think that you are very lucky to be seen by the Sheffield Team. 😀

Good luck, and hope that you don't have too long a wait.

[Yeswithasmile in reply to SlowDragon]

Phew. Exhausted reading that. So sorry you have had such an appalling time 😔.

Was utterly astonished to discover I was gluten intolerant, (zero gut symptoms) and multiple vitamin deficiencies

No gut symptoms at all???

[SlowDragon Administrator in reply to Yeswithasmile]

Absolutely NONE.....just never well on levothyroxine...and struggling to walk more than 100meters at a snails pace

Now I walk over 10,000 steps most days

[waveylines in reply to SlowDragon]

I went strict gluten free at christmas slowdragon as it finally floored me. Best thing Ive ever done. Felt sooooo ill before..... Taken me three months but now all my symptoms that Ive struggled with for years have gone apart from tremors......more energy too! Amazing. My adult children were skeptical when I started but now totally behind me. GP referred me for suspected gluten ataxia had I ever heard of it (haha!!! Very funny! -some damage cant be undone too late for me after ten years of no neurologist ever having a light bulb moment) but it will be months be fore Im seen and to be frank am not prepared to reintroduce gluten to satisfy them. Been on list for a heamerroid op for a year but heard nought......dont think I need it now since going gluten free! 🤞🤞

[SlowDragon Administrator in reply to waveylines]

Astonishing isn’t it

Not one medic ever said in 26 years.....you might want to consider trialing strictly gluten free diet

Only when I joined this forum in 2015.....seeing day after day members saying that gluten free was transforming....

[waveylines in reply to SlowDragon]

It is indeed Slowdragon. My regret is not doing this years earlier when the neurological damage would be less.......hindsight is a fine thing!! The really annoying thing is the neurologist who saw me three times over the ten years never looked at gluten ataxia even though he co-wrote a paper on it published three years ago in the Lancet. Shame on him! It will be interesting to see if my need for b12 injections will diminish -so far not! B12 seems to dampen down the tremors.....now there is a project for some boffin!

[SlowDragon Administrator in reply to waveylines]

I found it took roughly a year for brain fog to lift

I still need to supplement vitamins...but possibly not quite as much

[waveylines in reply to SlowDragon]

Thanks SlowDragon. Happy to keep supplementing -at least there is a soution! I do tire still but I have improved & have times when I want to do things rather thwn dragging myself around!

[waveylines in reply to SlowDragon]

Meant to say that Ive been strictky gluten free since Christmas Slowdrago n or did you mean Nellie to trial it? Found the naughty syrups in take out coffees have gluten in them.....one of those made me really ill again. For me I have no doubt its NCGS.

[nellie237 in reply to waveylines]

"GP referred me for suspected gluten ataxia had I ever heard of it"

I take it this was after you told the GP that you'd gone GF? And the Sheffield Team are the local unit for this? Oh my word.

[Yeswithasmile in reply to nellie237]

So there is really a big improvement?! I am very pleased that your hard work seems to be doing the trick.

I can’t help but wonder if the sleep thing is part habit as well? You get so used to waking and tossing and turning that you just learn to accept it and so it happens because you almost expect it too?

Re T3 I meant a blood result. It would be interesting to see what that is. Obviously it seems you are feeling improved and you have a good t4 so hopefully you are converting well enough too. Onwards and upwards then x.

[shaws]

Don't add B12 supplements yet as your GP should ensure you do not have Pernicious Anaemia which is serious if untreated by quarterly B12 injections for life.

Our stomach may have changed and cannot absorb B12.

My mother's doctor told her her blood was now fine and she needed no more injections. Due to that decision, my mother developed stomach cancer and died with me pleading for more frequent pain relief.

[nellie237 in reply to shaws]

Hi Shaws,

I'm so sorry that your mother had to go through that - and you too.

PA is very much in the back of my mind. I'd been having injections once every 3 wks for 3 months, and each time I'd ask myself for the next few days "do I feel better for that" and the answer was always "No". I don't know which one or all of the deficiencies made for the worst symptoms unfortunately, but I will be keeping an eye on it.

One of the things that stuck, was that my handwriting became like a really old person's, but whether that was neurological, or just shaky from lack of nutrients? If that comes back I will know. Without this intention, but fortunately, I sent a letter to my GP with all the symptoms - so there is evidence if they return in a month or two.

I am concerned that we are much more likely to need B12 jabs as we get older - and less likely to be prescribed as we get older.

Thank you for looking out for me.

😊,

[waveylines in reply to nellie237]

Nellie so glad you are on the mend. Well done you. Yes my writing has deterioated and I struggle to write clearly especially if feeling stressed. Thank heavens for the keyboard!! 😊😊Your point about b12 deficiency becoming more prevalaent as we age is a good one and I agree......more likely to put it down to aging and not treat.lol....

[waveylines in reply to shaws]

Oh Shaws am so so sorry to hear about your Mum. How horrid for you and your Mum. Its horrendous to see a loved one in pain. Big big hugs.

[shaws in reply to waveylines]

It was my mother's GP who told her that she no longer needed B12 injections.

I think the GP was beginning to have neurological problems as there was an investigation regarding another patient.

[waveylines in reply to shaws]

Oh that terrible Shaws! Your poor Mum. I am so sorry that happened -truly.Trouble is it doesnt even shock me as other GPs have also done that to other PA patients or told them they are fine with oral tablets!!!. Over the years I have had some really appalling 'conversations' with some very ignorant GPs. I just wish they knew when to let be or at least do some reading before they come out with such crass statements/judgements. I have a reputation at my GP practise for standing up for nyself......dread to think what is on my notes.......but it has made them more careful!! 😂🤣

[waveylines in reply to shaws]

Its true the GP should check for PA but the testing means 50% get missed......so even if you get a negative you could well stil have PA. pA has all theo hallmarks of Hypothyroidism.........under diagnosed and undertreated if you go by the nhs. Lol.....

[tattybogle]

Well done for getting hold of all your results old results. How's your scary sounding Kidney thing coming on ? hope its all OK now

[nellie237]

I know - I've got them all on spreadsheets with %'s through range - its a bit sad really🙁

As far as my kidneys - its still scary, but I made it through 30days without being admitted to hospital which is good. 😀. I mean really good - there was a big NHS campaign in 2016 called 'Think Kidneys' because a large audit (NCEPOD) had shown that 50% of people in hospital with AKI had received inadequate care (most of those were in hospital for other serious reasons) and people died unnecessarily. Too many fluids given/not enough fluids given/wrong kind of fluids/medication given. I'm kind of glad A&E sent me home.

More testing next week - fingers crossed.

[tattybogle in reply to nellie237]

SAD ... but it's quite empowering , and much better than having no idea 'what was going on when' ... i've made a graph ! : )

I've got my fingers crossed for your kidneys., well done for keeping them out of the hospital. I'd heard that too.... kidneys don't like hospitals.

[SlowDragon Administrator in reply to nellie237]

Poor kidney function strongly linked to low Ft3

thyroid.org/patient-thyroid...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

academic.oup.com/ndt/articl...

hindawi.com/journals/ijn/20...

Recommend getting TSH, Ft3 and Ft4 tested

[nellie237 in reply to SlowDragon]

Thank you for these. Have you got anything in your vast library about Thyroid and blood pressure?

It was bp meds that caused my kidney function to take the rapid nose dive .......... how big a part my thyroid played in all this wasn't something I'd thought about until now.......... I'd assumed the lack of nutrition hadn't helped in general..........also that would cause low FT3?

[tattybogle in reply to nellie237]

it's a long shot , but i'll chuck this in the pot in case you find anything useful in it:- healthunlocked.com/thyroidu....

[SlowDragon Administrator in reply to nellie237]

Low vitamin levels tends to result in poor conversion of Ft4 to Ft3

Obviously gluten intolerance and coeliac both tend to result in low vitamin levels

[SlowDragon Administrator in reply to nellie237]

Was this high BP ...or low BP

[nellie237 in reply to SlowDragon]

High sorry didn't think

[SlowDragon Administrator in reply to nellie237]

Blood pressure is often affected by hypothyroidism

jamaicahospital.org/newslet...

[nellie237 in reply to SlowDragon]

You Star............. ⭐ I did not expect hypo to get a mention re high bp.

[waveylines in reply to nellie237]

Hope it all works out for you Nellie......also hope that once you are on effective thyroid treatment it also helps to improves your kidney function as being under treated to this degree cant be helping. 🤞🤞🤞

[Localhero]

Hey, this is wonderful nellie237 ! You must be thrilled.