I thought this was quite an interesting read regarding malabsorption of thyroid medication... link in post.

[CoeliacMum1]

I actually never given this a thought I don't know why, as seems quite plausible really.

I knew of the probability of T4 to T3 conversion being problematic with some individuals and more common In told in those with coeliac disease.

Here is the link, apologies if this has been highlighted before.

academic.oup.com/edrv/artic...

[nellie237]

Thank you CoeliacMum1,

As a fellow Coeliac/Hashi's I found that very interesting, and yes, very plausible.

It doesn't all fit for me though:-

I was dx Hashi's in 2007,and by 2012 I was on 200mcg, which is quite a hefty dose for 9 1/2 stone. During this time I was also on PPI's....so makes sense. Heart meds added 2012, which I used to just throw down with the Levo....but still OK on 200mcg for the next 6yrs.

In May 2018 bloods showed that I was slightly over-medicated for me with

TSH 0.09 .....................................................................(0.55 - 4.78)

T4 21.9 .........................................................................(9 - 22.7)

and I dropped to 175mcg.......Aug 2018 I dropped to 150mcg......and in Nov 2020 down to 125mcg. Still on PPI's etc

In Nov 2020 I was dx Coeliac, which makes no sense. In theory my Levo requirement for the previous couple of years should have increased further, but hey ho, not one size fits all. I was low on Iron etc at Coeliac dx, but looking back at my old results, I had been for years. I think I'm probably classic '13 yrs before diagnosis', but that doesn't add anything to the theory.

I'm now off PPI's, and have bloods taken as per advice here.😊

[CoeliacMum1 in reply to nellie237]

So you're still struggling with iron or has it resolved since being coeliac and adhering to gluten free diet?

As I understand thyroid conditions can cause low stomach acid and malabsorption not just coeliac disease...doubled trouble 🙄

My story is very long and weird, as I was asymptomatic to both my conditions at point of diagnosis. 🤷🏻‍♀️

I turned over in bed late Nov 2012 and apparently had a thoracic disc bulge hit my spinal cord caused what my orthopaedic consultant called paraplegic shock ...in that I literally was paralysed waist down it all feelings came back over 2weeks to almost not knowing I had anything wrong with me apart from burning sensation down left leg.

A now retired GP told me I had a trapped nerve and whilst waiting for physiotherapy appointment to get me fully fit, I started to realise I had few toilet issues (constipation)

Back to GP whilst waiting still to be seen for my back and was given laxative which didn't really work as they should... upping fibre water in diet eventually helped, in mean time I had rather a large set of blood test investigations which highlighted deficiencies, Hypothyroidism & Coeliac Disease that was off the scale... they couldn't even count as there was too many.

At this point luckily we have private health insurance and I got seen very quickly for my coeliac disease but was never referred for thyroid "GPs maintain this", I was told at the time.

I wish I had seen someone back then but pretty soon my meds sorted my levels according to GP and I've had stable thyroid test results ever since so they're very loathed to do anything although, I have asked to be referred a few times.

In December 2012 I eventually got appointment with physiotherapists on answering few basic questions they said would not touch me without scan as suspected a serious medical condition,

Within a week due to private health insurance I saw orthopaedic consultant and I had full spinal mri and the orthopaedic consultant confirmed I was very lucky to walk they see this condition once or twice every few years and 50% don't walk again.

Coeliac disease took 9 months to show a level that could be counted and gastroscope showed villi slightly stunted but amazingly not as bad as my bloods would suggest, I became negative for antibodies over 2yrs later and I'm extremely careful and a serious coeliac I don't take risks.

I now have a good understanding of nutrition.

This point is when all my problems started, by this time I'd started levothyroxine a month in and they upped my dose just once and dose has never changed since then to this day 100mcg ...mostly different brands of levothyroxine, which I'm now looking at and reporting where required.

I started after taking Levothyroxine with muscular problems (latterly stiff joints) and high creatinine levels to the point it's now classed as stage 3 kidney disease.

I've struggled on and off since, with mobility due to ongoing back spasm problems putting me out months on end which my Drs aren't correlating to my thyroid at all.

I've since had another full spinal mri and my bulge that was, is normal thankfully but now degenerate discs in lumbar which has come on over 7yrs as lumbar region was clear in 2013, I did have slight cervical disc degeneration which has now slightly worsened in the 7yrs too.

I'm now just left in limbo, trying to eliminate things as I go.

GPs says it's one of those things and life long pain relief is all that's offered, which I don't take, I'm all for eliminating rubbish not adding to my problems as feel one drug exacerbates other things in my opinion.

So I've joined here to pick the brains of others to hopefully get insight to my muscular & creatinine issues if any good evidence that I can give my GP to further investigate my condition but they won't take unregulated information seriously.

I have had some success in helping some symptoms, as last year was at my worse in Feb/March and now started hrt (Sept/Oct) as I'm perimenopausal and it correlates to the age timescale of things going haywire , and so far get twinges still but not full on problem, but still think more to be done with thyroid.

I do know once oestrogen starts to decline hormones go out of whack so I see it as complete hormone issue and all needs looking at.

I do periodically have deficiencies in Iron, Ferritin & folate and 6 months ago or so supplemented, so I do have on going malabsorption issues all this time later as my diet is good ... I have B12 injections every 3 months and was prescribed (although have to buy my own now) vitamin D3 as was badly deficient from initial bloods in 2013... had loading doses and maintenance ever since, although I do know that gives me higher creatinine levels as over years I've experimented testing leaving off vitamin D and some with, all mine with vitamins D I had higher creatinine levels... again something to look at.

I've seen same dietitian twice since Coeliac last year and she couldn't fault diet saw same person privately in 2013 and she knows I'm quite switched on regarding basic nutrition ... my insulin is up and down but not diabetic or even in pre diabetic range but again another hormone that's is common with perimenopausal problems.

My BP is good as is cholesterol.

How different we all are, hey!

I feel GPs have hard enough job deciphering what's what, but too much emphasis now on test results rather than how the individual feels, so many having ongoing problems.

So I might have an issue with malabsorption of levothyroxine.

I'm considering dna test to check conversion T4 to T3 to rule that out.

If I have malabsorption issues although, wouldn't that show in the Thyroid blood test and levels would fluctuate. 🤷🏻‍♀️

I'm due my annual review but asked what's being done and receptionist didn't know.

I've asked for access to results will check that at appointment.

I may have to pay for more tests that aren't being done.

Infuriates me as my gastroenterologist sent letter to my practice to make sure I have relevant tests at annual review.

But not all are done some years noticed B12 off and Vitamin D it's because I supplement so will be ok I was told, I had those put back on but who knows until after the event now if still doing them 🙄

[nellie237 in reply to CoeliacMum1]

Whoa, that's quite a journey.

Iron, I spent 3 months religiously taking the Iron, got my Ferritin up from 15ug/L to 69 and was really pleased with myself. Then I had AKI. I don't know what my Ferritin is at the moment as I'm due for testing in a few weeks. I do know that 8 wks after the AKI my RBC's dropped under range to 3.53 (3.6 - 4.9) which had never happened before, and haemoglobin was also lower than ever at 119 (110-153) so.......back on the Iron tablets for now.🥴 I find it really frustrating that I've never had Ferritin & RBC done at the same time.

Wow, asymptomatic for both, that's kind of cr@p. I had symptoms for both which is also kind of cr@p.

Hashi's, I was walking out of M&S and nearly fell into a clothes rail. I'd also lost consciousness at my desk for a few seconds on a couple of occasions. Fortunately, my head didn't actually hit the desk. 🤣My results weren't that bad TSH 8.6 (0.35 - 5.5) T4 11 (10 -21) TPO 633. Like many, I've never really felt well since.

Coeliac was classic symptoms. Dx on blood results 43 U/mL (0.1 - 3.5). Strange range, all the others I've seen are usually >100. Advised GF immediately and saw Gastroenterologist 4 months later, who booked an endoscope about 10 days after that (2nd Saturday in March). I received a letter last week apologising for the delay, and that biopsy results confirmed the diagnosis..........no other detail. I need to chase that up. I'm not totally convinced that they've been looked at.

I think that I've got a lot to learn about nutrition.

The paraplegic shock must have been really, really scary. You were incredibly lucky with the Physio. Was the constipation due to the Coeliac or the Spinal Chord? My gut was all over the place. I had a heart attack in Dec 2012 one of the Consultants in A&E was insisting on discharging me with gastric problems. A Cardiac Registrar saved my bacon. I'd had a really odd spike in TSH of 6.33 in May 2012?

Private health insurance used to cover much more than it does now. It was a private Gastro that put me on PPI's years ago.

I feel for you with the pain. My daughter has complications from Type 1 diabetes and has chronic debilitating joint/muscle pain.

I've seen a lot of references to low T3 in kidney disease, and that a large % of kidney patients are hypothyroid, but the studies are all at >stage 4. None I've seen were able to say which problem came first. I intend to raise this with my GP at some point as evidence for T3 testing, but I need to get my ducks in a row 1st. My thinking is that it doesn't matter which came 1st, as there is without doubt a connection & T3 is the common denominator.

My kidney function last week was Creatinine 65umol/L (45 -84) eGFR 80. I am going to have to add back some bp meds at some point though......another point for testing T3.

Of course kidneys control electrolytes etc and if this is not working well it will affect everything. T3 is needed everywhere including the kidneys. Chicken or Egg?

I get sent blood forms by text, which I print off and take to the path lab, so fortunately I can see what is being tested. I looked at BSG guidelines when I was diagnosed, primarily to see the differences in treatment prior to Covid. I wouldn't pay for any of these (page 7 on the pdf) bsg.org.uk/clinical-resourc...

"Once the disease is stable and the patients manage their diet without any problems, annual follow-ups should be initiated. The physician should check on intact small intestinal absorption (

full blood count,

ferritin,

serum folate,

vitamin B12,

calcium,

alkaline phosphatase

associated autoimmune conditions (thyroid-stimulating hormone and thyroid hormone(s),

and serum glucose),146 147

liver disease (aspartate aminotransferase/alanine aminotransferase)40 and

dietary adherence (anti-TG2 or EMA/DGP), although the sensitivity and specificity of the latter cannot substitute for structured dietary interview."

Note: No kidney function testing. Mine has been tested annually since Hashi's.

B12..........I had jabs every 3 wks for 3 months. I now take Igennus B Complex, daily dose is X2, but I only take 1. I'm trying to keep supplements to bare minimum, and why on earth do they put so much B6 in supplements 🤷🏻‍♀️

D3...........It seems really petty that this isn't tested. I've wondered how much the loading doses of 40,000iu pw might have played a part in the kidney injury - interesting that you noticed an impact. I now take 2,000iu with 25mcg K2-MK7. I'm waiting until I can cut the Iron right down before I make a decision on magnesium. I need to look at calcium intake too.

If I have malabsorption issues although, wouldn't that show in the Thyroid blood test and levels would fluctuate. 🤷🏻‍♀️ I think research suggests exactly that, I don't know what happened in my case, but I'd say its not a given.

[CoeliacMum1 in reply to nellie237]

The constipation was due to spinal cord problems it slowed everything disown further.

You mention T1 since puberty mid teens I have hypoglycaemic problems but just ate something and it would subside, now 40 years on and now not doing much exercise due to mobility issues and carrying too much weight I can't do that ... I have had several hypoglycaemic episodes, I sweat shake and go dizzy and so weak.

My Dr told me to carry glucose tablets... yet it's never investigated as I'm towards upper end of normal Hb1ac.

But then I do eat a good diet to control blood sugar as always been aware, but I'm not saying I'm T1 just always had very sensitive hormone responses.

I just eat too much, and like a glass of wine or two at weekend but it's the only time I do drink, unless it's a celebration, as that's not so great for gut health, so now more I'm careful.

I have heard few having been diagnosed with T1 late in life but it's not very common I'm told.

Nobody in my family (knowingly) has Thyroid or Coeliac disease problems, or diabetes and few have been tested.

There's blood pressure problems with both parents and my father died this April of heart failure at 84, he'd been on BP meds for several decades but otherwise ok bar his mobility issues later in life, he was perfect weight too.

My blood pressure is perfect according to what GP told me, I do have white coat syndrome where I have abnormally high reading at Drs, but home monitoring for a week is totally normal.

I've got quite interested in nutrigenomics although not parted with my money to do it yet.

It's interesting how some block or utilise various vitamins and nutritional things we require and can stop us feeling completely well, and it can be quite eye opener if vegan or vegetarian with not just the more common things to supplement B12 & Omega3 (DHA & EPA)

A new one for me to learn about was beta carotene and where most vegan or vegetarian would get their source of Vitamin A from bright orange vegetables, some and it seems more than you think, don't convert it to the retinol form, therefore eyes/sight could suffer... Life Code GX is where I got this source if information. FYI.

I guess bottom line is we are all uniquely different even identical twins as Professor Tim Spector has found, our gut microbiome is unique, so we process things differently even though we eat the same things it's not just genetics and epigenetic factors.

Hopefully we will get individualised health plans in the future, rather than this pharmaceutical lead one shoe fits all.

[nellie237]

My HbA1c is also towards the upper end of normal and I've had these episodes too. "I sweat shake and go dizzy and so weak." I'm not so sure that it is just low sugar, but maybe a general malabsorption thing. A couple of times I've assumed I was hypoglycaemic, but on finger prick testing my blood sugars have always been OK. I do eat too much sugar, I love sweet fruit, if I can find it. I'm not going to eat green bananas or unripe apples. My weight is good, but so is my mobility. I really feel for you there.

I haven't been able to drink alcohol for years, 1/2 glass of wine gave me an immediate gut hangover, like the next day after I'd been drinking all night when I was younger, so I gave it up.

I'm sorry about your Dad, that must still be terribly raw. My parents died when I was19...so I'm not familiar with the ageing process, I don't have a point of reference for my aching, not so well functioning body.

I hadn't heard of Nutrigenomics, but it sounds very interesting. Hormone resistance too, which I don't think the medics look at enough.

[CoeliacMum1 in reply to nellie237]

I was told it's most likely insulin imbalances and you can crash after high carbs meal or something just unique to us which is regarded as ok generally but it just goes out of whack.If I eat white potatoes and they're like sugar bombs for me as is white rice.

It can be indicative of diabetes I've been told too, as you become more insulin intolerant. 🤷🏻‍♀️

I think I get bracketed into on watch for T2 as over weight and it can't be anything other even though my Hb1ac is normal and not been in the prediabetic range yet, and as mines just ok and I watch what I eat if I took my eye off the ball and ate a lot of refined carbs I'd probably be diabetic.

I'm not low carb I just eat healthier carbs.

I definitely know gluten free processed foods are shocking and don't help me... I had my highest reading 5 yrs ago which trigger my GP to watch my blood sugar and I was eating junk.

I reduced my hb1ac quickly by just making my own things eating naturally gf foods only pasta I buy now and try the higher fibre ones where possible.

I had also considered adrenal issues too as a contributing factor but that's my theory with me.

Think many have been stressed and possibly and some unknowingly with Covid and the uncertainty.

I'm with you on the fruit when I have it it's got to be ripe... although bananas do have benefits being green to, but I only eat ripe or overripe ones.

I'm loving strawberries at the moment. 😊