I posted yesterday in the Thyroid UK forum and had some very helpful, friendly and informative replies.
One person called Aspmama suggested that I post here as she believes there may be some good help and advice from people here. Which I would be very grateful for.
Rather than repeat my post (same title as this post) and the replies here is a link to it here: healthunlocked.com/thyroidu...
In summary I am suffering from the worst exhaustion. It is so terrible it's hard to explain. Whereas a few years ago I felt healthy and well enough to work long hours in a stressful environment, play sports, socialise and do normal things, normal healthy people do. Now I have lost my job, and have no chance of working at the moment as I feel shattered from the moment I get out of bed in the morning. I also feel off balance and dizzy often. I have lots of hypothryoid symptoms such as feeling so cold and hair loss, weight gain.
I was diagnosed hypothyroid with hashimotos in Oct 2013 and coeliac disease confirmed by biopsy shortly afterwards.
Aspmama suggested I should repeat this extract from a letter my endocrinologist sent me following blood tests in October 2014:
"The positive gastric parietal cell antibodies are associated with normal B12 levels but symptoms of flatulence, and gurgling after meals. I wonder whether this is related to a degree of achlorhydria and impaired protein digestion."
Current medication: 100mcg levothyroxine, 20mcg t3. 100mcg pregabalin (for sleep but doesn't help, but does help reduce my anxiety) The levo has only recently been increased since endo dropped it down to 25/50 on alternate days when endo incorporated the t3. I am due a blood test in 3 weeks to see the effects.
Latest blood test results below extracted from my thyroid post:
28/07 (with T3 and dropping levo down) T4 = 6.5TSH = 1.09T3 = 4.6
July 2015:
WBC 4.7 X10^9/L ( 3.7 to 9.5 ) Auth
RBC 5.03 x10^12/L ( 4.32 to 5.66 ) Auth
HB 161.0 G/L ( 133 to 167 ) Auth
HCT 46.1 % ( 39 to 50 ) Auth
MCV 91.7 fL ( 82 to 98 ) Auth
MCH 32.0 pg ( 27.3 to 32.6 ) Auth
Platelets 205 x10^9/L ( 140 to 400 ) Auth
Neutrophils 2.3 x10^9/L ( 1.7 to 6.1 ) Auth
Eosinophils 0.1 x10^9/L ( 0.0 to 0.5 ) Auth
Basophils 0.0 x10^9/L ( 0.0 to 0.1 ) Auth
Monocytes 0.5 x10^9/L ( 0.0 to 0.8 ) Auth
Lymphocytes 1.8 x10^9/L ( 1 to 3.2 ) Auth
Red Cell Folate In progress
Calcium 2.57 mmol/L ( 2.15 to 2.60 ) Auth
Adjusted Calcium 2.47 mmol/L ( 2.15 to 2.6 ) Auth
Phosphate 0.93 mmol/L ( 0.80 to 1.40 ) Auth
Albumin 47 g/L ( 35 to 50 ) Auth
Alkaline Phosphatase 68 U/L ( 30 to 130 ) Auth
Free T4 6.5 pmol/L ( 10.3 to 24.5 ) Auth
Free T3 4.6 pmol/L ( 3.5 to 6.5 ) Auth
TSH 1.09 mIU/L ( 0.3 to 5.5 ) Auth
I chased the red cell folate twice and got the response that it was "normal". I don't want to push the endocrinologist too much as he is very helpful, and he emails me as his waiting list is many months long.
Vitamin D is now optimal at 86 when tested in May. It was as low as 30 a while ago. "therapeutic level 80+"
This is another extract from the Oct 2014 letter re B12: "normal active B12 and red cell folate (126pmol/L and 738nmol/L respectively" It doesn't mention the ranges though.
5/2/15: B12 = 771pg/ml (range 174-1132)
So my B12 would seem to be in the normal range, which the endo and GP have confirmed. However maybe with the coeliac disease I'm not absorbing it properly?
I feel like I getting worse every day. Private health care stopped when I was pushed out of my job, and the cover was rubbish anyway - most things were excluded, the GP keeps trying to diagnose me with CFS and give me anti-depressants, and the endo, who generally has been really supportive, has done all he can on the NHS. I have had tentative chat with a nutritionist, and a lab testing company. But I don't want to order a bunch of tests, costing money that I don't have coming in, if they're all going to come back in the "normal range."
Any advice would be much appreciated. Thank you to anyone who got to this point, for taking the time to read all this!
Lee
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ExhaustedLee
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Coeliacs would affect the ability to absorb B12 but not affect anything past that, ie how your body processes it. The levels you have quoted don't indicate any actual problems with absorbing B12.
Do you know what your folate levels are like? The body needs folate to absorb and use B12 so if your folate levels aren't good that could be part of the problem.
Another possibilty is that you have a gene that affects your ability to methylate either B12 or folate (lots of different genes and all affect things in different ways) - basically this means that you can absorb B12 and folate but your body has problems converting this to the form that is used at the cell level. This wouldn't appear to be the case with for you with B12 as you seem to have quite good levels of active B12, but the same may not be true for your folate levels
There are tests - don't think they are very expensive - that will tell you if you have one of the variations.
A finally possibility is functional B12 deficiency, ie a problem at the cell level, eg your body is producing anti-bodies to the mechanism that transports B12 to the cell level (TC11) - so good levels in blood but none of it getting through to where it is needed.
As far as I am aware there isn't any way of investigating this on the NHS and I have no idea what private testing is likely to cause.
The antibodies are produced in response to higher levels in the blood and your levels are getting towards this point ...
Unfortunately high levels of B12 in the absense of supplementation can be indicators of kidney and liver problems
Thanks for taking the time to reply to my post. I am about to call a testing company this afternoon to asking about MTHFR testing and cortisol too and find out what other tests they recommend for me.
These are my blood results (incl. folate) taken when I did a glucose tolerance test privately in October 2014. They are extracted from the Endo's letter to my GP: Fasting glucose 5.4, two hour 5.0, nadir glucose at 180 mins 3.5mmol/L. Adjusted calcium 2.46, phosphate 1.01, cortisol 580, positive gastric parietal cell antibodies but normal active B12 and red cell folate (126pmol/L and 738nmol/L respectively), TSH 1.38, fT4 16.4, fT3 4.3, ferritin 73, Vitamin D 86, LFTs normal, Na 139, K 4.0, urea 3.8, creat 94. There were no ranges given.
Your comment re liver and kidney problems has concerned me!
Your folate looks about mid range - have looked for the normal ranges which are around 317-1422 nmol/L
can't really comment on the other results, though being positve for GPC antibodies, is indiciative that you may have PA - and hence will become B12 deficient in the future even if you aren't deficient at the moment.
The linked article was arguing that high B12 should be investigated as well as low as it can be an early indicator of problems - but there could be other causes - so suggestion is that a high level is worth investigating. Very different from a diagnosis - just an indicator.
One blood test that is done rarely on teh NHS for B12 deficiency but is available privately is a "Blood film" or " blood smear". It can show up unusually shaped blood cells. B12 deficiency can affect the shape of some blood cells eg red blood cells and I think neutrophils.
I am not taking any B vitamin supplements currently but I have in the past to try to give me a boost but they didn't seem to do anything other than make me tingle and my urine bright yellow/orange!
I am about to call a testing company this afternoon to asking about MTHFR testing and saliva cortisol, so I will ask about B12 tests too.
Your endocrinologist mentioned possible low stomach acid(Achlorhydria) Which causes all sorts of tummy problems, including poor absorption of nutrients. I have this problem, and G.P.told me that there was no treatment for it. I have been helped enormously by taking a water-based probiotic called Symprove. Took full dose for about 4 months. Now on 1/2 dose. The probiotic helps keep the stomach flora happy which helps digestion, and heped my stomach aches,bloating and nausea. Don't know if this might be of help to you.
Thank you. I take GI Complex from Biocare which does seem to help. It keeps me more "regular" than the ups and downs of constipation and diarrhoea! I'm glad you're feeling better now.
Thyroid and B12 autoimmune disease, together with severe fatigue, balance problems and anxiety, puts you in two high risk groups for severe PA/B12 def. (researchers believe leaky gut is the ground zero of autoimmune disease), so it' It is a good idea to record your symptoms and the following guidelines in writing to your GP (templates below) as well as the information from the neurologist, as I'm told that their biggest fear is of being sued :
For a start, I hope this extract from the BCSH guidelines will help persuade your GP to begin injections as soon as possible as there is a short window of opportunity before neurological symptoms become irreversible :
"The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no further improvement".
“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord."
The BMJ research document, already given by SBunny,is supported by many research papers and shows that you should be treated on symptoms - levels measured in the serum blood test do not necessarily mean that B12 is transported to your tissues. (See film on the B12def. website above) I'll put the summary in a separate post if you want to copy and print out with your letter as GP may not read full document. It also tells GP that, once b12 treatment is started, the test results don't mean anything and blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters....
I hope you are able to get better treatment soon Lee.
(I don't know what's gone wrong but the site won't let me separate the paragraphs)
Wow! Thank you for taking all that time for this reply and your others below. Much appreciated.
I had a long chat this morning with Lorraine the helpful thyroid advocate that I mentioned in my other post. She is adamant that I have PA/B12 deficiency regardless of what my test results have shown.
That's really interesting those guidelines that they are supposed to conform to. I have been told by the endo that B12 injections are not an option for me on NHS as my results are within normal range.
This statement particularly struck me! "***It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."
Every time I sit in front of the GP and say I'm suffering from crippling exhaustion they say it's the anxiety which is making you tired. My arguement back is if you fix the exhaustion, the anxiety will go! The medical opinion seems to be the other way around. I know in my heart that I am right on this. I never had any anxiety until I felt like I was going to pass out everywhere I go and kept questioning in my head why the h*ll I feel so ill.
Sorry, went off track there.
So you think I should write to my GP requesting B12 injections and include these statements?
I can only say that it is a very stressful process. It took over a year of battling for my relative - misdiagnosed with ME for years and then dementia - to get injections and she is now on monthly injections from an Indian doctor in the practice. She made a remarkable recovery supplementing also with Jarrows Methylcobalamin 5000mcg, SL. I originally wrote a letter with full history (vegetarian/vegan and hypothyroid) and later emailed research and guidelines. I've still no idea whether this made a difference as it was completely ignored.
She also had high B12 levels but had been supplementing before the serum tests.
When I realised I was also deficient, I decided I couldn't handle the stress of going through it all again as I'm already in my Gp's black books for refusing to have my thyroid medication reduced! But I also seem to be fine on Jarrows 5000, + gluten free + daily sauerkraut.
Your symptoms and absorption issues mean you will probably need injections for life so it is worth a try but only you can decide Lee.
That's good to hear that your relative has improved. You have helped her get her life back! Im pleased you are feeling better too.
I am going to call this testing company this afternoon and see what tests they suggest I should have re B12, MTHFR etc. Then I have my follow up thyroid blood test in less than 3 weeks. Once I have the private results and thyroid results I think it will be time to look at self medicated the thyroid, B12 or probably both.
* Vitamin B12 deficiency is a common but serious condition
* Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.
* There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."
* There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.
* If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.
Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.
***It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."
You may also be interested in this recent question in the House of Lords:
"To ask Her Majesty’s Government how they propose to alert medical practitioners to the severe and irreversible nerve damage that can occur when pernicious anaemia is misdiagnosed." Countess of Mar - Crossbench
"There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients."
And because Lee naturally put up a v long post, can I just highlight for him, he tested POSITIVE FOR ANTI PARIETAL CELL ANTIBODIES. Sorry to shout - his consultant expresses this in a way which is easily missed.
I would guess he was mainlining supps before his blood tests because he felt so bad, explaining the relatively high B12.
Thank you all so much for replying. I knew he would get help here.
I have been reading back through my letters from the gasteroenterologist and there are some things which may or may not relate to the issues you have mentioned. I have typed extracts below: (apologies if this info is irrelevant)
Nov 2013 (after referral from GP):
"you demonstrated him to have strongly positive anti-tissue transglutaminase antibody" (must have been from something GP sent to the consultant with the referral)
Dec 2013 (official coeliac diagnosis letter to GP):
"the appearance of the oesophagus and stomach were normal, but there did appear to be duodenal atrophy"
"duodenal biopsies show flat mucosal architecture with increased intaepithelial lymphocytes" (I think this relates purely to coeliac effects)
"Ferritin and folate levels were normal, whilst vit B12 value was 927 pg/ml, which is about 50% above normal limit for this lab, but that is not of any concern"
"His calcium level was marginally raised, but the corrected calcium was within the normal range"
"I doubt that he has a second pathology"
Oct 2014 (following second gastroscopy and first colonoscopy):
"CLO test was negative"
"duodenal biopsies are now normal and show good response to gluten exclusion"
"terminal ileal biopsies and colonic biopsies are normal and we have no evidence of intestinal inflammation to account for his symptoms"
Ah but - anti parietal cell antibodies are common apparently - even in completely healthy people. As I was told; "if you go looking for these things, eventually something comes back positive".
Finally think you are getting somewhere proving this isn't all in your head and the GP just says that the result is meaningless!
I expect they are common because autoimmune gastritis is a common illness! "If you go looking for things eventually.... you get something which produces a diagnosis." Your GP sounds hopeless.
Can't see a ferritin test in that list. I have anti parietal cell antibodies and similar gastric symptoms which I assume are due to low stomach acid. My main problem is absorbing iron - iron needs stomach acid to be absorbed. My main symptom was exhaustion. GP also tried to diagnose me with CFS/depression and wanted me to take anti depressants. I'm very slowly getting my ferritin level up by taking a lot of iron and definitely seem to have more energy than I had when my ferritin was very low - but it is a very slow process.
Thanks for your reply Laura. My ferritin was 73 in October 2014. There was no range given.
How did you find out you had anti parietal cell antibodies?
Oh no! It's terrible isn't it! I'm not willing to spend the rest of my days sat at home accepting a diagnosis of CFS, slowly going downhill while symptoms get worse. There must be a way to get us better and back to good health, work, a social life, back on the football pitch (or whatever your hobbies are). It seems impossible to me right now, but there must be a way!
Yes - it makes me so angry that GPs are happy to dole out antidepressants or a diagnosis of CFS without ruling out everything else first. When I first went to GP with a long list of symptoms GP dismissed all of them as 'normal'. Said she didn't think I was anaemic as the inside of my eyelids were not pale. Haemoglobin came back as 9 and ferritin as 5. So GP decided I must have heavy periods - no listening to me saying no I don't. So I researched reasons for iron deficiency and found three reasons for iron malabsorption - h. Pylori, coeliac disease and autoimmune gastritis. Managed to eventually get tested for all three and the anti parietal cell antibodies came back positive. Luckily GP allowed me to have B12 injections on the basis of that result (my B12 was about 360) but it seems that it is my ferritin level rather than B12 which was/is causing the exhaustion. Ferritin level is now 18 - I'm trying to get it over 40. Autoimmune gastritis seems to be something which is very little understood by doctors. Even the gastroenterologist I saw said that there was nothing wrong with me that explained my symptoms - he basically said it was anxiety. When I asked for the results of the biopsies he'd taken, the pathology report said that I had chronic gastritis - as I expected.
I really hope that you get to the bottom of what is causing your exhaustion. Good luck!
Oh your post has made me angry (on your behalf) You had the dreaded "oh that's anxiety" statement too! It's so frustrating. The amount of times I've said "I know my body and myself better than anyone and I know something isn't right and it's not 'anxiety'"! And they just glaze over and switch off!
How often are you having B12 injections? Are you taking over the counter iron supplements?
I'm having hydroxocobalamin injections once every 3 months when I'm in the UK but self injecting cyanocobalamin once every month when I'm not. Loading injections had no effect on my exhaustion though so I'm keeping up with the B12 just in case - and to make sure it stays on my record.
Yes I'm taking over the counter iron - I was taking them once a day to see what happened to my ferritin - but it only went up by 1 in a year so I'm taking them more often now.
Lee, your new excerpts are interesting. So your villii are back, you are doing well on the gluten free diet, and dealing with the celiac side. Clutter's advice on the hypo side will be correct, she's phenomenally good, so if you follow her advice you should get your hypo optimal treatment.
It sounds as though your gastro did look at the stomach lining, but I'm not sure without research that there are necessarily visible changes there in Autoimmune Gastritis, or whether any changes would be end stage, as you move into PA.
If you have inflammation in your body - which you must have had with celiac - the ferritin level rises and it can skew the results. 70 isn't a bad level, but if inflammation is still playing in to that figure it might be deceptive.
There is also the possibility of other nutrient deficiencies, given your constellation of problems - more minor mineral deficiencies.
I've never managed to make myself take betaine with meals but a lot of people on the hypo side swear by it.
How are your kidneys, by the way? Kidney function is affected by hypo.
What I am quite sure of is that your tiredness is due to your physical problems, not a psychological or psychiatric difficulty. That suggestion is just what the medical world turns to when it can't figure the problem out.
Autoimmune gastritis should show as chronic gastritis in the fundus/body of the stomach even before atrophy. But from what Lee has said it doesn't sound like he had any biopsies from the body of the stomach - just the terminal ileum, duodenum and colon?
This is an interesting paper which looked at the state of the stomach mucosa in a random sample of people in Estonia in the 80s. It found that all those with parietal cell antibodies had increased serum gastrin (showing low stomach acid) and some evidence of chronic gastritis in the fundus of the stomach.
Yes I think you're right. I don't think he particularly looked at the actual stomach. I wonder if it's worth emailing him to ask if anything was noted, and to mention positive parietal cell antibodies were found during endocrinology blood tests?
I think you would need to have the biopsies taken - as far as I understand, the stomach can look completely normal with chronic gastritis until atrophy is reached.
Fasting serum gastrin is a test which should be raised if you do have low stomach acid - might be easier to get this than have another endoscopy?
Yeah I've known since day 1 it's not all in my head. I was a (mostly) healthy, active, busy human being until a few years ago and now I'm an empty shell. I know my body and I know that something isn't working correctly for me to be feeling this shattered all the time. Off balance and dizzy on occasion etc.
I definitely need to sort my thyoid meds out. Going to see what this next blood result shows then make a decision from there. Which is looking more and more likely to be taking the big scary plunge to NDT.
I had the urea and electrolytes test and all was "normal"
Re the AIG I think Lauras message below is right when she says the gastro didn't look closely at my stomach, he took biopsies from other areas of the instestines.
I know its a bit sad, but following chats with thyroid advocate, nutritionists, the lab testing company and all the helpful comments on the PA and THyroid UK forums I wrote an action plan at the weekend for me to try to heal myself once and for all! It may not work but I've been gluten free and on levothryoxine for so long now and just gradually getting worse and worse. It's time to try different things.
You could try adding Betaine HCl with meals to see whether it has any effect. I've read one published paper which showed that it does increase stomach acid for a certain time after it was taken (by the very small sample they tested). I've just started taking them with every meal. There are lots of anecdotal reports of them helping with people's symptoms on the web. I decided it was worth a try.
I've decided on 1 or 2 tablets with main meals. I did once take 2 when I was taking very high levels of iron and that was quite painful - I think that the iron had irritated my stomach which meant that the acid hurt. So that has lead me to believe that 2 is enough to make my stomach acidic.
Hope you start to feel better soon on that tablet.
I've just checked a supplement I bought a while ago from Nutri to help my stomach as "betaine" sounds familiar. I took it for a few days but didn't notice any difference so I stopped.
Just dug it out from the back of the cupboard and lo and behold.. ingredients: Betaine HCI 650mg. Pepsin 45mg. Maybe I'll try taking it again.
Yup. It's an extraordinary thing. Zillions go into the NHS, but we have to self-test, self-diagnose, read the research we can access, and attempt to heal ourselves. Your plan is not sad, but rational.
I don't think NDT is scary. There is good research now suggesting a minority need T3. And you can stop taking it if it ain't working. And a lot of people on the very impressive Thyroid UK forum say it worked for them.
Glad you have the self-confidence to disregard the psych stuff.
Well I haven't disregarded it completely. I have been to CBT sessions for anxiety because feeling so exhausted that I'm going to pass out in public or at work, or behing the wheel had made me a wreck. I've also been to an insomnia clinic. But I'm just sure in my mind that these mental health issues have been brought on my physical symptoms.
Yup. I do feel I'm beginning to be a health stalker! But I was looking up Addison's in case my own very poor initial response to Levo might be because of underlying Addison's when I saw this, which seems to overlap with a lot of your conditions and might also be worth looking over.
"Medical studies estimate that around 5% of individuals with autoimmune Addison’s develop pernicious anaemia (vitamin B12 deficiency). Much
smaller proportions are estimated to develop conditions such as vitiligo (loss of pigmentation from parts of the skin), coeliac disease (gluten allergy),
alopecia (hair loss), myasthenia gravis (muscle wasting), thrombocytopenia purpura (loss of blood platelets), Sjogren’s syndrome (dry eyes and mouth) or rheumatoid arthritis.
Autoimmune Addison’s is not usually a
directly inherited condition. But a tendency toautoimmune diseases does seem to run in some families. Where autoimmune Addison’s occurs on
its own, some kind of family association with the condition can be traced in about one-third of cases.
Where it occurs as part of a polyglandular syndrome,
some kind of family history of related autoimmune
diseases can usually be found in about half the cases.
Where a tendency to autoimmune
endocrine disorders is inherited, it is often not the
same condition as the parent/grandparent but some
other related autoimmune condition, which appears
in the next generation. For example, a grandmother
with Addison’s disease may see one of her
grandchildren develop vitiligo or a thyroid condition."
Thanks for looking into this and thinking of me aspmama.
The Endo has previously dismissed this because my cortisol levels were normal. But you're right, I do tick a lot of those boxes for it. I've just done some reading up on it myself:
"Early-stage symptoms of Addison’s disease are similar to other more common health conditions, such as depression or flu. You may experience:
•fatigue (lack of energy or motivation)
•muscle weakness
•low mood
•loss of appetite and unintentional weight loss
•increased thirst
Over time, these problems may become more severe and you may experience further symptoms, such as dizziness, fainting, cramps and exhaustion. You may also develop small areas of darkened skin, or darkened lips or gums."
I have noticed a few small dark patches/circles appear on one of my arms over the past year or so which has concerned me slightly but with everything else going on with my health I havent paid too much attention to them.
The article I read also says:
"However, many people with Addison's disease also find they must learn to manage bouts of fatigue and there may be associated health conditions, such as diabetes or an underactive thyroid."
Hmm...
Well I have just ordered metabolic syndrome profile and adrenal stress profile testing kits. So we'll see what results they throw up.
I think Addisons is unlikely if your cortisol level is normal. But what about Sjogren's - main symptom exhaustion. And it is associated with antiparietal cell antibodies.
I've looked up all the studies I can find on that eyelid (conjunctiva) test, and so far as I can find, it is not evidence-based. If you have pale inner eyelids and pale creases on hands then it has a high correlation with advanced anaemia - but I think you'd be so ill you'd already know that. But it does not rule out mild anaemia, let alone iron depletion, ie, low iron storage. And yet the conjunctiva test is used by GPs and even consultants (not haemotologists, I hope) up and down the country as though it ruled out iron problems.
They are so unscientific!!
Next time someone uses it I am going to say: "Can you tell me what the evidence base is for this test please? Because my understanding is that it is not evidence-based."
If we all did that, we might chip away at their arrogance.
But it is cheap! Same GP who said I didn't have anaemia due to eyelids not being pale and was proved wrong did the same thing to my grandmother a couple of months later. It takes a lot to make people change their fixed ideas.
So it is falling. I would keep an eye on that. This paper investigated iron take up in people with achlorhydria and found that chronic gastritis lead to a negative iron balance - so if you do have achlorhydria it is likely to keep falling.
Hi Foggyme. Apologies for the delay, I've not been on here for some time. Sadly no improvement in my fatigue despite switch from levo to NDT over a year ago and starting B12 jabs around this time last year as well as all the supplement regimes I'm on. In fact I'm slightly worse.
Thank you for your kind words - even now I won't give up! I want my life back (or at least a much better life than currently)
Hi ExhaustedLee. Oh don't worry about the delay...I seem to live in a time warp and sometimes days and weeks pass without me even realising 😖.
I'm really so,sorry that you're still feeling so ill after so long.
I've re-read this thread and a couple of things spring to mind.
First - am I right to assume that your endocrinologist also tested parathyroid and pituitary function?
But here's what really struck me...have you had full screening for other autoimmune conditions?
Your symptoms and circumstances seem to exactly mirror mine. B12 issues, multiple gastric issues, exhaustion, weakness pain, insomnia - in fact all the symptoms you list - and perhaps more that you don't.
I've had B12 deficiency (undertreated initially, but not now) and 18 months ago developed severe gastric symptoms, lost 2 stone in weight...a whole heap symptoms...and thought my B12 had stopped working. Increased B12 / appropriate supplements made no difference.
After fighting with my GP (who variously diagnosed CFS, ME, fibromyalgia - without even a cursory examination) I demanded referrals and trawling around all the 'oligy's' I have finally....just been diagnosed with undifferentiated connective tissue disease (which may turn out to be lupus or sjogren's - just waiting on more tests).
Best bit - commenced treatment immediately (steroids and immunosuppressants)...so after 18 months of having no life whatsoever, I now have at least the prospect of some recovery.
When I read your string again (six months after I first read it) I was immediately struck by the similarity between our symptoms, especially the fact that treatment for other known conditions made little difference and the rate of descent increased.
It's obviously impossible to know from a few words whether another autoimmune condition (or a cluster of them) is responsible for your continued ill health but as you are already 'autoimmune', it's entirely possible that you also have another, as yet unidentified, autoimmune condition.
It wasn't until I was referred to a rheumatologist that the answers began to arrive for me (following strongly positive ANA 1:1600 homogenous patterned).
Anyway...perhaps this has all been done...but I though it worth mentioning...just in case.
Here's a link about autoimmunity and if you follow the links / pages, it will show,you which test your GP should do initially, and also the more complex ones that a rheumatologist would undertake.
Again, I'm so sorry that your doctors seem to be failing you. You don't sound to me like someone who's illness has its roots in depression (though after so long it would be entirely understandable if you did become frustrated and depressed).
Really pleased to hear that there's still some spirit in there...and you're right....you shouldn't give up.
Your doctors should keep looking and investigating until the find the cause of your symptoms - 'cause there will be a cause. They just have to look hard enough 😀.
I really hope that you manage to find some answers and start to get back into,your life.
I'd be very interested to hear how you get on and if I come across anything or think of anything else, I'll add to this string (will follow it so I can find it again).
No the parathyroid and pituatary have not been tested. I am under care of NHS as I lost my private healthcare when I lost my job.
Re autoimmune I have coeliac disease, hashi's, vitiligo and parietal cell antibodies (that we know of) I agree with you that these autoimmune problems are probably at the root of why I'm feeling this ill.
I have been able to do things for an hour or 2 but then I am shattered. I get out of bed exhausted every morning before I start my day, but I push myself to walk my dog or pop somewhere for an hour just to pretend I'm living some kind of life. I won't just give in and lay in bed all day like some people do.
It's crazy because I used to be so busy and active with work/sport/social life.
It's interesting that you have had many of the same symptoms and feelings. Thank you for sharing that with me.
I saw the endo last week for the first time in a long time. He has reduced NDT and added in a small amount of T3. Been doing it 7 days now and no difference. The amount of things I've tried is crazy. Feel like I'm wasting time and money on NDT and b12 jabs. I'm no better than a year ago on levothyroxine only!
I do hope you are feeling better on your steroids and beginning to get your life back
Really think you would benefit from seeing a rheumatologist...they deal with all things autoimmune and could perhaps track down any other autoimmune issues that are going on (the endo will only focus your thyroid issues).
I really admire your grit and determination...trouble is, will-power alone doesn't make the sheer exhaustion go away - like you, I've tried that for far too long.
The steroids have worked some magic for me - I can finally move my frozen shoulder and get dressed without having to make a dastardly plot 😀. The immunosuppressants will take a while to kick-in (Feb-March) so I guess until then I'm stuck with the away full dragging exhaustion.
I really hope that you find some answers soon - it's really hard work having to,push the NHS all the time, but you just keep on pushing - demand an appointment with a rheumatologist (based on your autoimmune history).
And I know what you mean about private healthcare - we used to have that with my husband's job, and sorely miss it since he retired. But how bad that we can't get that kind of treatment from the NHS!
It's so annoying isn't it, cause I'm sure that if you were diagnosed and treated properly, you'd be able to get your 'proper' active life back. And how good that would be.
Anyway ExhaustedLee, please take very good care and I'll be keeping everything crossed for you 😀 x
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Searching for a diagnosis (DESPERATELY) Please helpppp.... Is B12 deficiency / PA possible with these blood tests??? NEW HERE
Advice needed
Burning Mouth Syndrome?
What to do next? 
could someone check my test results please to explain them to me?
