So my sons gp says there is nothing wrong with his folate but when I posted results on here everyone said it was too low and he needed treatment ....I queried this with gp and this was their response they also said his B12 at 173 was OK too and refused injections can some advise on the below please which was the gp response
The serum folate level came back as 1.1 ug/L. You were informed that it is low but not a true deficiency. The laboratory performed another test for the red blood cell folate which was within the range and normal. The red blood cell folate is a true measure and came back as 129.9 ug/L with a range of 75.0-500.0 as normal
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Lanvere
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My GP won't treat any vitamins either, none at all despite being very low in range on D, Folate, Ferritin and B12 initially.
She said to buy over the counter if you are worried.
The members here have been so helpful with their suggestions. Has he tried a B Complex? That would contain both B12 and Folate. 🌱🦋🌱My first B Complex was Thorne Basic B, I got on well with this but found it a bit expensive. I'm trying Igennus Super B Complex (slightly different mixture and contains Vit C) which is cheaper but then I discovered you have to take two a day for the same quantities... ARGH! So I should have stuck with Thorne. Ah well, I'll finish these and switch back.
I used to buy Igennus but was put off by an experienced member here saying shouldn't take vitamin C with multi B's. These Swiss BioEnergetics are a good price, are working for me, available on both Amazon and eBay.
yes I remember that too, I thought it when it arrived. I don’t think it’s suiting me too well. Thanks for the tip, I’ll give those a go if I can’t get Thorne again.
just one thing. you need to be tested after you take them to ensure they are being absorbed and making a difference. I took B vitamins but when tested found they weren't being absorbed and have to have B12 injections. Iron also not being well absorbed.
I think I’m right in interpreting this to mean that:
the serum folate test provides evidence that there’s been deficiency within the last 13 weeks or so
but
the red blood cell folate test provides evidence of a longer term deficiency in the last 36 weeks or so.
In other words, your son’s folate deficiency would appear to have happened quite quickly. He’s had a rapid deterioration in levels.
The doctor seems to be saying that the red blood cell test is a superior test and is showing that the serum folate test is fine. Don’t think that’s the case. Give it another few weeks without folate supplementation and the red blood cell folate test would also drop. It is a true deficiency, it’s just not showing up in the other test yet.
Is this the same doctor who’s refusing to go against what the endo said about waiting until your son’s TSH reaches 10? Or another one in the practice?
I wouldn’t consider this a satisfactory reply to a complaint at all.
That response was from the practice manager ..she sided with the gp decision on everything and they stand by their decision even to the point of saying he doesn't have untreated thyroid condition because endo said his bloods were good without levo but that was 2021 and no one knows when he stopped taking it. I've responded saying that they have put lot of stock in what this endo said about treating at 10 what with him being the expert and all that and its a shame they haven't referred him back to this one. Gp has referred him but to a differed endo at a different hospital so there is no history ...appointment given for 31st May...I've made an appointment to see private endo that originally diagnosed him in 2016 for next Thursday ..
Have you tried contacting PALS ? Patient Advice and Liaison Service in your area? They look at complaints/ concerns independently from the practice act as a mediator. You can speak to them or email your concerns.I have just had a good result from an interaction with my local PALS and a written apology from my local hospital. It might be worth a try. Good luck
I didn't know you could contact PALs for gp complaints thought it was just for hospital ones ..I will look into this thank you... my instinct this morning was to write another email to the practice manager but have decided to wait until the private endo has seen him next week then raise a formal complaint if appropriate...I feel fairly confident he will be appalled at the way my son has been treated but will wait for that outcome before I go wading into battle I think x I have already sent the blood results over to him with some background info and I really do think if he agreed with the GP treatment he would have cancelled our appointment
I've made a private endo appointment with the one that made the original diagnosis..I sent the flow chart to them which they ignored along with everything else ...
A 'Serum Folate' test measures the amount in the blood stream that could theoretically be falsely elevated if blood were drawn directly after a folate rich meal (much like iron). Therefore, you really need several serum folate labs to make a true assessment on deficiency status but as this isn’t feasible we tend to view results in conjunction with others, ie if Vit B12 & others look low/unhealthy, it is a fair presumption to take a low folate result as a genuine.
Red blood cell folate concentrations respond slowly to dietary intake changes because of the 120 days lifespan of erythrocytes that accumulate folate only during erythropoiesis. Therefore, a 'Red Blood Cell Folate' test is a more true indicator of sufficiency/deficiency levels.
Because your sons red cell folate result came back as 129.9 ug/L (75.0-500.0), he is within range and not at the bottom, so could most likely raise this level through a folate rich diet. However, if all other nutrients are low or on the way down, this could be indicative of gut absorption issues (as opposed to just a folate insufficient diet) and so assessing gut issues might be beneficial as well with additions such as HCL and/or digestive enzymes.
However (again), if this result is in combination with other low results such as Vit B12 (the two work together and should always be tested together), I would be mindful this could be indicative of early onset folate deficiency/anaemia, and would want everything retested after several months to assess if dietary changes are sufficient or if supplements are required.
With ‘serum total’ Vit B12 bloods we only tend to aim high within range to cover all eventualities and because levels can drop so quickly. However, being a combination of both forms; active (bound to transcobalamin) and inactive (bound to haptocorrin) it is impossible to tell a true deficiency as a stand alone result.
Active Vit B12 and Red Cell Folate are both superior tests to the usual standards and given the O/P’s son is well within range on both test ’s and has a healthy RBC count and haemoglobin levels I would say he is not deficient and does not need to supplement VitB12 or folate at this stage.
I agree Vit D level is painfully inadequate and requires supplementing asap.
Lanvere
Unless we suddenly acquire conditions such as Graves antibodies or experience a reversal of postpartum thyroiditis, Levo should be a life-long medication and only titivated with the hormonal fluctuations caused by Hashi. Have you asked why your sons medication was stopped?
You could try writing directly to the endo pointing out that when previously diagnosed with autoimmune thyroid disease and medicated with 100mcg Levo your son felt well with 'TSH of 1.68, FT4 of 21.5 and FT3 of 6', but now unmedicated TSH is over range, FT4 very low in range and he is extremely symptomatic and had to give up work. Therefore, can Levo be reinstated asap.
The other option your son has is to buy his own Levothyroxine which is readily available form abroad and members will supply their sources by PM if you ask. However, be aware if your son were to do this, because thyroid issues are so poorly understood it would not guarantee his meds be reinstated and could even work against him.
Elevated liver enzymes are common in untreated or mismanaged hypothyroidism and usually reverse once thyroid hormones are optimised.
A FBC provides details on quantity and quality of RBC’s and haemoglobin (as well as other), ie MCH measures average haemoglobin in a RBC and usually correlates with MCV which measures RBC size. Anaemia is defined by any of the following; low haemoglobin, low hematocrit, low RBC count but the the O/P sons has good results in all of these groups. The only indicative result of something possibly amiss is his RDW is higher end of range but as this is an inflammatory marker, it can not be associated with anaemia alone without other corrosponding results.
Therefore, these good results evidence his Vit B12 and folate needs are being met but does not guarantee levels won’t drop in the future as low thyroid hormone is notorious for gut issues and malabsorption. Therefore, I suggested dietary changes and gut supplements to reduce risk of later anaemic tendencies developing.
would it not be best, before taking any vitamin suppliments, to find out if the patient has any mthfr mutations? I won't explain why but a simple google search will lead you to some material that can answer any "why?" questions this comment may elicit. Since your Dr. probably won't even mention this (the overlords don't want folks to concern themselves with mthfr)?
There is a super group called Pernicious Anaemia/B12 Deificiency on Facebook whith an absolute wealth of information and lots of practical advice about guidance, complaints etc. I think you would find it really helpful.
As long as his results fall within the range your not going to get any joy from the doctors in treatment no matter what you think/feel or what people here tell you …. I had to start testing myself and treating myself for anemia because all my doctors think my iron test are fine “16” is not fine but falls in the range so to them its fine …. Is it right no its not but this is what it is.
I also have to pay out of pocket for my Rheumatologist because previous doctors thought I was fine with severe joint pains that I just needed to take breaks (ha) I actually ended up bedridden and home bound for 2 years because of these doctors who believe everything is normal because my blood test were in range …. Diagnosed with Psoriatic Arthritis from a Rheumatologist that I pay for who was flabbergasted that the other (3) Rheumatologist I saw didn’t catch this (normal blood test) but my arthritis has no blood test (idiots) …. Anyway sometimes we have to fix our own health issues and leave the idiots out of it.
My oldest son has psoriatic arthritis, high lipids, fatty liver and thyroid antibodies but tsh of 1.68 and t4 11.1 which Is normal but low in range ...he has a rheumatologist that isn't interested In thyroid but I'm sure his results would be deemed subclinical hypothyroidism because of the low t4 ...I asked for a referral to rheumatologist because I'm on thyroxine and am in terrible pain as I wanted a check for sjorgens disease but they refused to see me and referred me back to gp who did some bloods and nothing more ...so guess I'll just keep taking the pain killers 🙃
Hypothyroidism sadly have its own set of problems pain being one of them its not uncommon and definitely see it here a lot and yes a rheumatologist wouldn’t be interested in anything thats not arthritis related and Endo not interested in joint issues with hypothyroidism they tell you to see a rheumatologist…. Its a never ending battle of wits with all the nit wits.
I have been grinding whole flaxseeds and adding them to my morning smoothies to see if this can assist with my high cholesterol and joint issues… read some promising studies as far it helping my cholesterol 🤷♀️ but so far for my joints I feel like its been helpful but again who knows really could be a placebo effect.
It's awful isn't it. I've been using boswellia serrata (Indian frankincense) since November for inflammation ..it also helps to lower chlorestorel which I have 6 monthly injections for ...definitely found it helpful supposed to be really good for Psiaortic arthritis too ...
Yes my cholesterol is 7.9 and has been for years ...had heart attack may 2020 and 2 stents fitted ...cant take statins coz cause debilitating diarrhea so offered I injections via lipid clinic and agreed ...no side effects and cholesterol down to 5.2 ....with boswellia hoping even lower now x
I was on 100mg but because my TSH was 0.5 and T4 17.5 they have reduced to 100mg and 75mg alternate days. I have argued that if they reduce levo my T4 goes down and I don't feel so well but they're having none of it dose changed in November so due a retest
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