So far, in the past 3 years, I have had a diagnosis of firstly B12 deficiency then functional B12 deficiency because my MMA was raised. This diagnosis, from GP, was confirmed by the laboratory. Later disputed by haematologists.
Then Lactulose breath test result suggested MMA raised because I have SIBO (small intestine bacterial overgrowth).
Gastroscopy showed duodenum problems suggesting coeliac disease (flattened mucosal pattern in D1 and D2) although have not yet seen biopsy report yet for confirmation.
Latest report from metabolic diseases consultant suggests MMA (usually 350-400 nmol/L, with range of 0-280) not high enough to be a cobalamin or transporter defect as this would show readings of commonly 20,000 and above !
"GGT and ALT mildly elevated, normal ALP. Low protein in plasma amino acid tests: raised glycine and BCAA below -1 SD suggesting poor protein intake. No zinc/ vitamin A problem and normal urinary MMA."
Can anyone shed any light here, particularly on what raised GGT and ALT might show ? GGT & ALT were comfortably mid-range in 2016 but ALP was 72, then recently (Feb 2018): ALP was 125 (range: 35-104) .........and normal 2 weeks later ??
[ Meanwhile, I have got a recurring salivary gland & duct problem, which I think may well be hampering my attempts to utilise any extrinsic factor B12 by messing with my haptocorrin (hence need for injections perhaps ?)- just a theory. ]
Any ideas welcome: I'm very confused now.
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Cherylclaire
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Many apologies if I have asked before - but have you had your thyroid correctly checked - not just the TSH. Liver issues can be linked to low thyroid as can many others 😊
Looking at your fab self portrait I noticed two tell-tale necklace type crinkles on your neck. This was once told to me by a Greek Doc to be a sign of Thyroid probs. Gone are the days when Docs looked at their patients for clinical signs ..... 😊
It is a possibility that has not been investigated beyond the usual 2 NHS tests which I know, from what you have told me previously, are insufficient. At least 2 of my sisters have diagnosed thyroid issues- one has Grave's and psoriasis and lots of autoimmune problems- so perhaps worth bringing up with Gastroenterologist on 2nd visit in 2 weeks? The Inherited Metabolic Diseases consultant is also going to see me again- but I think only to say goodbye!
Perhaps my next painting will be called "Hamsterface"- and you can see what happens to me if I get too hungry !!
PS: Thought the crinkles were just "knocking on a bit" AKA "character" !
The tests needed are rarely done in the NHS - although you could emphasise the family conditions which are often connected. This should help. If you are in a position to have some private tests through Thyroid UK - then Medichecks do Special Offers on Thursdays.
These are the tests you need - TSH - FT4 - FT3 and the Anti-bodies TPO & Anti- Tg.
Sadly the NHS do not do well with treating or even diagnosing Hashimotos as they think the treatment is all the same - so the FT3 and the Anti-Tg is rarely tested. So many people missed. Links to Private Testing companies below - used by 100's and 100's of people on Thyroid UK due to poor treatment in the NHS.
Have printed them out, Marz, to read at home, and written tests down.
Cheers for that: I'm going to see what the gastroenterologist says first, since I'm only able to work one day a week at the moment. She seems amenable and I might be lucky. I certainly can't fault the NHS for tests, scans etc.
I used acrylics, by the way. Never painted in oils yet- they're not very living-room friendly !
That sounds like a plan Of course the NHS can come up trumps on many an occasion - but it is not always the GP or Consultant that will not do the correct and much needed tests - but the labs. All down to costs Also Docs have been trained that the TSH tells you ALL - which is not the case. I know it is tough - but try to have a read up on stuff - like the TSH - or Thyroid Stimulating Hormone is a Pituitary Hormone so tells you diddly squat about the Thyroid ! The Thyroid produces T4 - which is a storage hormone and does VERY little - and has to convert into the T3 - needed in EVERY cell of the body - and yet rarely tested. You couldn't make it up.
A bit like testing Iron and saying it's fine so you cannot have B12 Deficiency.
Auto-immune Thyroid illness is the most common thyroid condition in the world so if the anti-bodies are not tested how would they know you do not have it ?? TPO & Tg.
If my Premium Bonds come up this month I will pay for your tests
Had they also tested the T3 and that too was low in range then I would be suggesting Central Hypothyroidism rather than Primary - when the TSH is high in range but the FT4 & FT3 are low. Guess you can now see how compliated it all is.
As you can see your TSH increased in the second test and the T4 reduced - so thyroid beginning to struggle. Please do not forget those pesky anti-bodies ....
Have you ever had an accident involving your head or neck ?
Accidents involving head and neck? " that I can think of: starting with a collision with a bus when I was about 18 (in which the bus came off worse !) and ending with an ice-skating fiasco in which I "button-holed" arm, trying in vain to protect said head and neck from collision with barrier- I was then about 50, a lot older, sadly no wiser. Why did you ask ?
Will let you know if I get lucky with Thyroid tests.
Let me know if Ernie's got a surprise waiting for you !
The reason I asked is that with head and neck injuries - the Pituitary gland can be damaged - a possible cause of Central Hypothyroidism. The Pituitary Gland secretes the Thyroid Stimulating Hormone that kicks the Thyroid - telling it to produce T4. Those are the two tests you had. Both results were low - which could indicate that the Pituitary is not receiving the right messages from the bloodstream. When T4 is low in the blood the Pituitary increases TSH to encourage the thyroid to produce more T4. Your TSH is not doing that ....
Maybe you had your tests done in the afternoon after breakfast and lunch - TSH lowers after eating. But that does not explain the low T4. TSH is 2 or under in a healthy person and the T4 in the upper part of the range. You did not post ranges - so am using my knowledge of various ranges as labs do differ.
You could speak with your GP and offer to pay for the tests that are not covered by the NHS - that may reduce the costs.
Write down the Tests needed for the Consultant - as they will only do the minimum - which tells you diddly squat ! TSH - FT4 - FT3 - Anti-TPO & Anti-Tg. Make a note to remind you about the Family connections with Thyroid conditions - it can help to focus their minds I was under a Gastroenterologist from the age of 27 until I moved here some 30 years later - for Crohns. Endless surgeries and no Terminal Ileum - not once did they mention B12 - or the lack of .... Hopefully things have improved.
Will have to wait for early in April to check my winnings - if any !
I've been so lucky with consultations and tests- so you have B12 deficiency because of having surgery removing part of ileum- like Clive ? How awful that B12 deficiency was an inevitable consequence, and not planned for !
You asked about ranges- these are the ones I was given:
TSH: 0.4- 5.50
Free T4: 10.3- 24.5 then altered at some point to 12- 22
Thanks for all the above information, it's been really helpful. Hope we both get a good result in early April ! (Gastroenterology part deux on 6th)
Thanks for the ranges. For the FT4 to be optimal it is better around 19. This means that when the T4 converts into the active hormone T3 - that level will also be low. That is the one that causes symptoms ....
Fingers crossed for you - hope your appointment goes well.
The Formula :- 22-12 x 0.75 + 12 = 19.5 optimal level for T4
Hi Cherylclaire . From what you say above it seems you have an appointment to discuss these results with the metabolic specialist.
My understanding (which is limited) is that mild elevations of GGT and ALT can occur if even small amounts of alcohol are consumed 24 hours prior to the test, and also with quite a lot of medications (i.e. ibuprofen, steroids, and a whole host of other).
You don't say what the recent levels and reference ranges are (perhaps you don't know - consultants often don't put this useless (🙄) information in letters) but it sounds as if the your levels are not worryingly high, so perhaps nothing significant.
These tests are not specifically diagnostic but have to read over and against other investigation: they can point to things that may need further investigation - liver, gallbladder, bilary tract etc. (though mild raised results may simply be followed up with re-tests to check that levels have returned to normal and are not rising).
GGT and ALT mildly elevated, normal ALP...some information that might be useful before your appointment (so you can work out what you want to ask...not so you can frighten yourself 😉):
Interestingly, the patient.info link above contains this information:
Up to 10% of patients with inexplicably raised transaminases actually have coeliac disease. Minimal or mild alteration of aminotransferase levels may be the only visible tip of the 'coeliac iceberg'[7].
(Just thinking here of your biopsy for Coeliac's - be interesting to see if there is a connection).
It's all very frustrating isn't it...I think the harsh 'medical' reality is that many people with B12 deficiency don't manage to get to the root cause of the deficiency....and the diagnosis ends up as...B12 deficiency (not very satisfactory but I think more will become known as research progresses).
So...you may (or may not) end up with B12 deficiency as a diagnosis...unless coelic's or something else is unearthed on the way.
If that happens, it's good news (in a way) because in your case, so many other things will have been ruled out 🤔😀.
The most important thing is that you are now having much more frequent B12 injections...and you're improving on what sounds like a day by day basis.
And hurrah for that, because it's been a very long haul.
Yes it has, but like almost all the other consultants I've seen, he has also made it absolutely clear that he does not agree with my self-injection regime, or believe that B12 deficiency is the reason for all my problems (while not stopping my 2-monthly NHS B12 injection - yet).
Since I also seem to have folate, ferritin and vitamin D deficiencies, I'm inclined to agree with him. Cannot untangle and apportion symptoms any more, and can't afford to stop injections for 3 months so that he can see for himself just how deteriorated I can get - would lose my job, for one thing, even if I could gradually get back to where I am currently healthwise .
Well, if it's not drink* or fags, it must be diet: he also talked in his report about poor protein intake and dietary improvements, although the dietitian who was with him asked a lot of questions about my diet and was satisfied with my answers, as was the one before. I think I'm going to stop telling people that I've been a vegetarian for 40 years- what do they imagine I've been surviving on when folate is also coming up low ? And what's happening to all those expensive vitamins I'm taking ?
Have read on Thyroid website that all of these deficiencies could be an indicator of thyroid condition, also seems likely with coeliac disease and SIBO. Not ruling anything out.
So until then, am doing my best to maintain B12, folate, ferritin, vitamin D.... and hair !!
* Had nothing to drink at all for at least 3 days..... although in his report, he noted that according to me, I drink 9 units a day !!! (I said "week"). You are right, no levels or ranges given.
Hmm...low ferritin, vitamin d and folate deficiencies, together with B12 deficiency all point to an absorption problem.
I wouldn’t be surprised if B12 deficiency was the cause of your health issues...just debatable what the causative mechanism is...and does that need treating too...
Not unusual to hear of another consultant who doesn’t know of the neurological regime of B12 injections for those with neurological symptoms. Sadly.
The proof resides in the fact that you're improving on the frequent injections. Thank goodness 😄.
Honestly, when a consultant keeps smiling and saying "I'm on your side", it makes you a little wary. So was expecting the slant of the report to be about reducing B12 and not about what could be wrong with me: however, since I cannot stop injecting B12 for 3 months AND keep my job, the decision has mde itself and he has no way of knowing whether B12 deficiency is my initial problem or whether it is a symptom of something else, like SIBO. Fortunately, the Gastroenterologist said she would treat me for SIBO if nothing else showed up from the tests.
Yes, you are right, the biopsies will either confirm that I have coeliac disease or not, but I cannot find another reason for flattened mucosa in duodenum.
Gastroenterologist said there is no harm in continuing with injections, and ENT consultant told me I was doing exactly the right thing, that I clearly had a B12 deficiency, and that it would take a while so be patient and persistant with injections. Happy with that.
Will let you know what happens next! I think we're finally getting somewhere .. and when I do get a diagnosis, I will be sure to send it to the two gastroenterologists along the way who dismissed me (untested) as having IBS. This could have been resolved a whole lot earlier if either of them had listened.
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Also Docs have been trained that the TSH tells you ALL - which is not the case. I know it is tough - but try to have a read up on stuff - like the TSH - or Thyroid Stimulating Hormone is a Pituitary Hormone so tells you diddly squat about the Thyroid ! The Thyroid produces T4 - which is a storage hormone and does VERY little - and has to convert into the T3 - needed in EVERY cell of the body - and yet rarely tested. You couldn't make it up.
too late to prove b12 deficiency?!
demyelation of white matter in brain update
mma test
