Iron is normal, ferritin was 90 ug/L last time checked
Hello, I've had severe health problems for around 8 years now and have been through many hospital departments and tests and no one can still quite figure out what's wrong with me. I've effectively been given the label of having CFS and discharged as they don't know where else to look. Symptom-wise my main problems are energy related, I have relentless fatigue/weakness and it's pretty much impossible to exercise. Very pale skin, weight gain, problems with temperature, excess sweating, hair on chest falls out easily, many grey hairs, droopy eyelid on one side, memory and focus problems and so on.
What was found through testing;
- Mild RLS
- POTS Syndrome (2 failed tilt tables, unresponsive to traditional treatments)
- Abnormal exercise stress test results (collapsed at the height of the test, results showed very high lactate 18mmol/L and very poor vo2max peak)
Have passed all of cardiology's function tests and they determined it to be a metabolic issue but endocrinology have no clue.
Recently I took a wide range blood test with medichecks (above taken at 10am) and tried to make some sense of the out of range markers and it lead me down the road of potential hypothyroidism. My TSH certainly isn't high enough to get the NHS to take any notice but combined with my prolactin, cholesterol and vitamin levels for example would you say it's a possibility or am I reaching?
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CursedLemon
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Have you considered Pernicious Anaemia (PA)? Your B12 is below range and your MCH is slightly above range. Your folate is barely scraping into range.
I’d be pursuing this as a possible cause of your symptoms. It’s an overlooked and poorly understood condition amongst healthcare professionals. There’s a PA site on healthunlocked, I’d recommend you see what the folks there think. Good luck.
Previous bloods on the NHS over the years have shown low range folate but B12 mid range, this is the first time I've ever been tested for active B12. I shall check out the PA board thank you very much.
What has been said about your high prolactin level? The Endocrinologist should be testing and checking your Pituitary.
You are also Folate deficient and B12 needs attention. I’d be supplementing Folate with something like ingennus Folate and Ingennus also does a good BComplex too that will help with B12 and other general Bs. This will help your thyroid.
My prolactin has been raised at this level for the whole 8 years along with LH and cholesterol but every endo I've spoken to insists it's nothing to worry about, couldn't possibly cause symptoms and would be in the thousands were it a tumour - pituitary is clearly overactive for some reason though.
As J972 said on their reply it would be helpful to get your GP to check your B12 levels. Are you a vegetarian or does your diet not contain much meat? Your active B12 levels are low.
It may be an idea to get your high prolactin levels investigated. As Star13 says you may need to have your pituitary checked.
I couldn't see a vitamin D result there? (Sorry found it!) I'm sure I've read on another post that vitamin D levels can have an affect on your prolactin levels.
This earlier post regarding high prolactin may have some relevant replies you can look at;
Hello hedgeree, I'm not a vegetarian/vegan, if anything I probably eat slightly more meat than the average person. NHS endo's are very dismissive of the prolactin results, they're saying it's nothing to worry about or investigate further. Regarding vit D this test was taken while I'm on 3000IU a day, perhaps I have absorption issues with B12 and D.
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
Your B12 is so low you almost certainly need B12 injections
A week after first B12 injection add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
Thank you very much for the high effort reply. As said above not a vegetarian/vegan, very solid diet, variety of meats eaten. I've tried folate (methyl and non-methyl) and a B complex in the past, folate makes my symptoms considerably worse and the B complex would cause harsh migraines which I later narrowed down to biotin as the culprit. B complex's without biotin don't seem to exist. I've been on 3000IU daily vit D for quite some time, results always tend to be on the lower side regardless. I will look into all of your suggestions.
It's less likely that you have hypothyroidism, based on your blood test results, but as others have mentioned here, you may have a vitamin deficiency, which is much easier to treat than attempting to convince an endocrinologist to give you a trial dose of levothyroxine.
Are you taking any prescription medications?
Vitamin D
"Vitamin D deficiency may contribute to symptoms of Postural Orthostatic Tachycardia Syndrome (POTS). One study found that 56% of 180 POTS patients had low vitamin D levels, and supplementing with vitamin D3 may help with symptoms. Vitamin D deficiency can alter catecholamine levels in the sympathetic nervous system, which can lead to higher levels of norepinephrine than epinephrine. Vitamin D deficiency can also cause increased pain sensitivity and muscular aches."
"Other deficiencies that are common in POTS patients include iron, folate, and vitamin B12. These deficiencies can be caused by fat malabsorption or restricted diets. A balanced diet and daily multivitamin can help prevent or correct these deficiencies. "
The symptoms of vitamin D deficiency are often subtle, so many people don’t know they’re deficient. Some of the effects of vitamin D deficiency include:
Fatigue or tiredness
Bone pain
Joint pain
Muscle pain
Sour mood
Low energy
More frequent illness
Anxiety
Irritability
Weight gain
Hair loss
RLS
"Some studies have found that people with vitamin D deficiency are more likely to have RLS than those with normal vitamin D levels:
One study found that 53% of people with vitamin D deficiency had RLS, compared to 38% of those with normal vitamin D levels.
Another study found that 75.6% of people with RLS had a vitamin D deficiency, compared to 42.3% of controls. "
I frequently have to get up during the night and place a tennis ball under my gluteus muscles (butt), maintain pressure on the trigger points for a few minutes, and that (temporarily) gets rid of my RLS so that I can go back to sleep.
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