Please help with my results, my background is I have Graves’ disease, thyroid removed 7 months ago. I have had a blood transfusion 9 months ago, an iron transfusion for low Ferratin 4 months ago. I also have thyroid eye disease and a heart arrhythmia, had an ablation for the heart.
My symptoms are
Dizziness/breathlessness
Sometimes nausea
Very lethargic
Aching arms and legs
arm pit and groin pain/ache (comes and goes)
Exhausted all the time
Memory and functioning problems
I am currently on Levothyroxine 125mg daily
recent bloods tests I have attached
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Mumms
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So your folate is deficient. GP should prescribe 5mg folic acid. If not then ask for advice here.
B12 isn't great at all. See what GP says about low in range B12.
No Vit D result.
As far as thyroid results go we really need to see an FT3 result to see if you are converting T4 to the active T3 and the NHS don't do this. Recommend getting private bloods done to see whats actually going on to cause your symptoms. Monitor my health or Medichecks are the cheapest to include D3. Discount code from Thyroid UK.
Yes, pretty normal for a hypo unfortunately. It's not something that your GP will necessarily accept as they get little training on it but thats where patient groups come into play. We know all the small detail stuff that your GP will never understand.
went to the gp yesterday, said low folate is nothing and unlikely making me feel the way I do. Then he went on to talk about depression! They really do not understand at all
I despair of GPs sometimes, they can be clueless and can only think of depression as a possible diagnosis. They just don;t have the training or knowledge to think of anything else sadly.
You need to get private blodos done. Use the discount code from Thyroid UK. Also full vitamin testing - ferritin, folate, B12 & D3.
yes they gave me 5mg of frolic acid , I also take a multi vitamin.
I have thyroid tests being done in March, I am going to try once again to see if they give me the t3 result, I have just had folate, b12 and Ferratin done. Might just get a vitamin test for now
There are many reason that multivits are not recommended here, not least they dont contain enough of anything to help a deficiency or to get your levels optimal. Better to target relevant areas with specific vitamins.
Pretty much noone gets FT3 done on the NHS unless TSH is suppressed and FT4 over range. Better off with private tests.
What were the other vitamin results?
You will likely need to continuously take folate to keep your levels up.
The blood test I have in March will be by the endocrinologist, they will check ft3 then. I have not had vitamin d checked since last year and that was on the edge of going low
I read that folate can be a lifelong vitamin I will need to take, doctor made it out like it was nothing and shouldn’t effect me And how I feel
If your vitamins are not OPTIMAL then your thyroid hormone can't work properly. The reason patient groups like this exist is because doctors do not know how to make us well. That includes Endocrinologists.
You would be better off swapping out the multivit for a good active/methyl B complex which would raise your low B12 too.
I agree, it’s very upsetting when you speak to either of them and they pass you off as someone who is depressed or anxious.
I know my body and I was pretty well and fit before the graves. They have put me through 3 months of therapy in which I scored very little on both! Now I throw that at them and all they offer is pain killers for my aching body which they give to people with arthritis and fibromyalgia, obviously I declined without a diagnosis of either.
I have vit D, zinc, vitamin c, iron and folate already, will order b12 now.
With the iron and folate it causes constipation, any advice on that?
Be sure to take your iron 4 hours away from anything else, especially your Levo.
The folate shouldn't cause constipation but the iron will. Take it with orange juice, drink plenty of extra water and if necessary get GP to prescribe a stool softener.
They did not test me after iron transfusion, only been tested now by doctor because of my symptoms
I have a varied diet so I eat everything except fish
I struggle to get any info, they won’t print out my results, I have requested for paperwork. Was told they don’t do that
I am under 7 different specialist and have no fight left in me to argue for what I need. I am sick of being throbbed of, I have had private blood tests in the past and doctors do nothing, and specialist plays it’s down.
I think what I really want to know is, if folate, b12, iron and vit d are because of the thyroid problem or is it separate? If I get those in range will I feel better
Low vitamin levels are directly linked to hypothyroidism, especially when inadequately treated
When hypothyroid we develop LOW stomach acid, this leads to poor nutrient absorption and low vitamin levels as direct result
Low vitamin levels leads to poor conversion of Ft4 (levothyroxine) to Ft3 (active hormone)
Low Ft3 leads to low vitamin levels
Low vitamin levels also tend to lower TSH ….all most medics look at
NHS only tests and treats vitamin deficiencies and generally disinterested is vitamins (no money for pharmaceutical companies in correcting to optimal levels )
Down to us to maintain OPTIMAL vitamin levels by self testing at least annually and self supplementing
Optimal levels
Vitamin D at least over 80nmol and between 100-125nmol may be better
Serum B12 at least over 500
Active B12 at least over 70 and over 100 better
Folate at least half way through range
Ferritin over 70 minimum, ideally over 100 with any chronic disease
A) fine tuning levothyroxine dose as high as possible. Always same brand levothyroxine. Could try taking split dose….half levothyroxine waking and half at bedtime
B) getting all four vitamins tested and optimal
C) trial gluten free/dairy free
D) always soya free
Retest TSH, Ft4 and Ft3
If Ft3 is still low, like at least 20% of patients on levothyroxine, you likely need addition of T3 (liothyronine) prescribed alongside levothyroxine as 2 or 3 small doses spread across the day
Email Thyroid U.K. for list of thyroid specialist endocrinologists and doctors who will prescribe T3 if necessary
Graves is an auto immune disease, and as such there is no cure and seems to only get recognised when your immune system starts attacking your thyroid and /or eyes.
Since you have ' lost ' your thyroid and need to manually take thyroid hormone replacement it is essential that you are dosed and monitored on your Free T3 and Free T4 levels and we generally feel at out best when the Free T4 is up in the top quadrant of it's range as this should in theory convert to a good level of Free T3.
T4 - Levothyroxine is a storage hormone and needs to be converted by the body into T3 the active hormone that runs and body and said to be around 4 times more powerful than T4.
Your own ability to convert T4 into T3 can be compromised by non optimal levels of ferritin, folate, B12 and vitamin D , inflammation, antibodies and any physiological stress ( emotional or physical ) and depression, dieting and ageing also down regulate T4 to T3 conversion.
The thyroid is a major gland responsible for full body synchronisation including your mental, physical, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
In order to know how well you are converting the T4 into T3 we do need to see both these vital hormones, T3 and T4 readings drawn from the same blood sample.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.
Some people can get by on T4 - Levothyroxine alone.
Some people find that at some point in time T4 seems to stop working well and need to add back in that little bit of T3 their body once supported them with.
Others can't tolerate T4 - Levothyroxine and need to take T3 - Liothyronine only:
Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroid dried and ground down into tablets referred to as grains.
Your body has been through a lot.
I don't know how severe your Graves symptoms were, but generally Graves knocks the stuffing out of the person and you do need to rebuild yourself back up from the ravages this autoimmune disease can cause on the body.
We a missing the most important blood test reading a Free T3 and there is no vitamin D reading and from my experience - I'm Graves - post RAI thyroid ablation 2005 -
I now aim for a ferritin up and over around 100 : serum B12 500 ++ : folate at around 20 and vitamin D up at around 100.
5 months ago you received a similar set of replies to your blood tests and were saying the endo was reviewing your case and your were going to get Free T3 tested :
Have you now seen an endocrinologist ?
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Yes I see the endo in the beginning of January, was told I was a little hypo so they upped my Levi from 125 every other day to 125 everyday. They won’t send me my results, and say I am within range and whatever is making me feel this way is not related to that. That has been the case since 2019.
This blood test was by my doctor because of my symptoms getting bad again. Endo is discharging me. Nhs don’t test t3.
I would have thought in the hospital, at least, in the endocrinology department you would have gotten the TSH, Free T3 and Free T4 readings run - this is beyond awful:
I do my own blood tests now as I thought it was just primary care where things had gone badly wrong.
If you go into Thyroid UK - the charity who support this forum - there is a whole section devoted to private companies who can run the bloods - some offer a nurse home visit - which suits me as it's less stressful - but of course costs a little more.
I now only arrange a yearly full thyroid panel - more for my vitamins and minerals than my T3 as I still need to supplement.
I'm astounded the hospital can't order T3 and T4 results - where are you in the country ?
no they don’t give me anything, they just say everything’s fine
I know they test in the endo department for t3, but they won’t give the results to me and that is the problem
since 2019 I have probably seen two results for t3 but that was a long time ago .
it’s a struggle, I have all sorts going on and get told it’s nothing to do with the thyroid so I am searching for answers. Hopefully if I get my folate sorted I will feel better. If not then I will have to get more bloods done privately and go from there
They won’t send me my results, and say I am within range and whatever is making me feel this way is not related to that. That has been the case since 2019.
Write and formally request copies of all your results…..they are legally yours ….they can not refuse
Please get your active B12 tested, you can get one from monitor my health website. Its a much better indicator of b12 deficiency although your serum b12 is low. Maybe have a look at the pernicious anaemia forum on here when you've had it tested. Get your folate and b12 up and try to keep your ferritin levels up as high as you can! They are all interrelated. Dont rely on doctors just get your own vitamins.Someone recommended a b vits complex, another good idea
If your not absorbing vitamins because of GI issues, I recommend HCL and pepsin to raise your stomach acid levels unless you have ulcers.
God bless you hope you get to feeling better soon!
I have ordered the b vit complex along with more iron and vit d pills.
Is it ok to take frolic acid 5mg prescribed by the doctor and the b complex together? As it already contains frolic acid?
I am on Omeprazole due to a hiatal hernia and osophagitis, so I need my acid lower then normal. Which is probably another reason why I am low on nutrients
If your taking omeprazole your b12 will be decreased as a result and you will have compromised absorption unfortunately so definately get that b12 in. No I wouldnt take anymore than 400ug of folic acid. If its already in the b complex don't double up. Ive been able to get mine up with 400ug, sometimes taking too much of something has the opposite effect especially iron
Your symptoms do sound like b12 deficiency, I had to get b12 injections because I got so ill to bypass my stomach after years of GI issues. You have to test active b12 before you start taking b12 though as you will have false high readings and never know how deficienct you were to start with. Your serum b12 is pretty low so no doubt the active will be. In Japan they treat you with b12 injections when your readings fall below 500! There is a lot of ignorance surrounding b12 deficiency and the terrible effects it has on people in this country though so they will tell you its normal when its far from it
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