I have been posting on the thyroid thread but it has been suggested that I post here. I paid for a private blood test from Blue Horizon and it showed the following:-
This is a hyperthyroid result (overactive thyroid gland). The high free thyroxine level suggests that there is some issue with your thyroid function though it has yet to affect your TSH levels. You may have symptoms already - including weight loss, rapid heart rate, sweating and anxiety, amongst others. If you are already taking thyroxine, your dose may be too high - if not, this result suggests that hyperthyroidism is a possibility. I advise you to contact your usual doctor to discuss this finding in due course. The finding of a positive thyroid antibody result in addition increases the possibility of your having autoimmune thyroid disease, such as Hashimoto's thyroiditis or Grave's disease.
The Folate (sometimes known as Vitamin B9) level is elevated. As with high doses of Vitamin B12, this situation is not likely to represent a significant overdose – as a water soluble vitamin, it is usually well tolerated by humans even in high concentrations. Supplementation or following a diet rich in the vitamin (for example fresh green vegetables) is the usual reason behind a high level of folate in the blood. Excess folate in the presence of low Vitamin B12 levels can lead to problems however – the B12 deficiency can be masked by the action of folate which will apparently resolve the megaloblastic anaemia caused by deficiency of either vitamin, but will not resolve the effects of B12 lack. It is important therefore to ensure that the Vitamin B12 level is acceptable if a high Folate level is detected.
Indeed, in this set of results - the vitamin B12 level is borderline low, and although technically in range some experts believe levels of 400-500 are desirable and that levels below this may lead to symptoms. Low Vitamin B12 levels can lead to Pernicious Anaemia (PA), a state of deficiency of the red blood cells in which there is reduced quality and number. Characteristically, the red blood cells are enlarged in this state (if the deficiency is severe and long standing). Vitamin B12 is commonly found in many foods, particularly meats. Deficiency can develop if intake of the vitamin is reduced or if absorption from the gut is impaired. Poor absorption owing to a deficiency of Intrinsic Factor (IF) is the underlying reason for PA. Vitamin B12 deficiency in the longer run can lead to nervous system disorders – with sensation changes, loss of power or co-ordination, gut disorders and (rarely) dementia or mental illness. Lower level deficiency has been associated with a range of symptoms such as fatigue, memory impairment, irritability, depression and personality changes.
I advise you to speak to your doctor about the lower B12 level
Their results:-
CRP 0.19 (5.0 mb/L
Ferritin 140.2 (20.150 ug/L)
TSH 0.43 (0.27-4.20 IU/L)
T4 Total 153.0 (64.5-142.0 nmol/L)
Free T4 28.06 (23-33 pmol/L)
Free T3 3.84 (3.1-6.8 pmol/L)
Anti-Thyroidperoxidase abs 181.8 (<43 kIU/L)
Anti-Throglobulin Abs 599.0 (<115 kU/L)
Vitamin D (25OH) 65 nmol/L
Vitamin B12 193 pmol/L
Serum Folate >45.4 (10.4-42.4 nmol/L)
I have attached a copy of my thyroid results by GP
I was told by the one GP that there is nothing that can be done for me but having a good search around this site and others I think there is something that can be done.
I have been referred to an NHS Endo by a different doctor, don't know how long it will take to get an appointment and when I do will it be worth the wait as they will most probably adhere to the NICE guidelines.
I have the list from Louise but there are no Endos in my area (Nottingham/Leicester). If I go private any ideas of what the cost many be and the ramification with the GP?
I also have Type 2 diabetes, well controlled.
Thank you Carol
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Redrow
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not as impressed by description of PA and B12D (as it is actually a bit confused as to what PA actually is - one cause of a B12 deficiency and it is B12 deficiency that will result in megoblastic anaemia, regardless of the cause - though it isn't necessarily one of the first symptoms to occur) ... but it is good in highlighting that numbers in the serum test are not a good guide.
Unfortunately it isn't uncommon for GPs to be totally unaware that B12 deficiency can't be diagnosed just from the numbers in a serum B12 test and that symptoms need to be evaluated.
unfortunately you will notice a significant overlap with thyroid ... and also with diabetes, particularly if you have diabetic neuropathy.
You mention type 2 diabetes - do you take metformin and if so how long have you been taking it. Metformin is known to interfere with absorption of B12 (and vice versa I believe), so long term use can lead to a B12 deficiency but awareness amongst GPs is low and the symptoms are frequently overlooked/masked/categorised as diabetic neuropathy etc.
you may also find this alert on the importance of evaluating B12 deficiency on the basis of symptoms rather than serum B12 numbers useful
I'd suggest you read the "BCSH Cobalamin and Folate guidelines".
Page 29 is a diagnosis flowchart that shows the recommended process UK doctors should follow with someone who they think may be B12 deficient (including those symptomatic for B12 deficiency but with normal range results?. Sadly some Gps may not have read this document and may be unaware of its recommendations.
Hi Redrow. It's sometimes difficult to know whether it's the thyroid or the B12 causing symptoms as they overlap. Most GPs will usually only treat a thyroid condition on the unreliable TSH alone, regardless of the fact that many people only feel well when their TSH is suppressed (as I do). They won't normally test for TPO antibodies unless you ask, nor will they treat your autoimmune condition.
Added to this, what they consider a normal B12 result is usually not, as the tests are also unreliable but your B12 is undoubtedly low, especially when considered with thyroid disease and diabetes (Metformin depleting B12).
Hashimoto's Hypothyroidism and PA are both autoimmune and, as you probably know, once you have one autoimmune condition, you are more prone to others.
Many researchers believe leaky gut/intestinal malabsorption is the source of autoimmune problems and I believe this is at the bottom of all our own family autoimmune/Hashimoto's thyroid/B12 issues.
Dr Marc Ryan's article below (on his Facebook page) is one of the simplest explanations I've found re. leaky gut and lack of absorption leading to thyroid/B/12def. and other autoimmune diseases. I'd also recommend Dr Datis Kharrizian's books "Why do I still have Thyroid Symptoms, when my Lab Tests are normal" and, "Why isn't my Brain Working". One if his recommendations is a gluten free diet.
..................
"Hashimoto's Health Tip: The Little Paint Brushes in Your Tummy"
"Anyone who has lived with Hashimoto's knows that this is so much more than a thyroid problem. The biggest axis of trouble is often found in the thyroid-brain-gut connection. And one common problem that causes this is leaky gut or intestinal permeability.
Many researchers believe that this is ground zero for autoimmune disease.
It is the place that autoimmune disease is born and the place that makes it get worse and worse. And when things get worse in the gut, problems in the thyroid and brain often follow. In this post, I wanted to shed light on some little known but very helpful enzymes called brush border enzymes.
The small intestines are the place where leaky gut often happens. And the walls of the small intestines are lined with tiny little hair like protrusions called microvilli. On a regular microscope they kind of look like a tiny, fuzzy paint brush. This fuzzy appearance is why they came up with the term "brush border" to describe them.
This is the place where absorption happens.
And many people with Hashimoto's suffer from deficiencies of important vitamins and nutrients (like vitamin D, vitamin B12 and B6, zinc, selenium, magnesium, iron, etc.)
One of the reasons for this is the breakdown of these brush borders.
Foods high in lectins or other inflammatory substances (like gluten, and other grains, beans and nightshades) can actually cause these brush borders to get crushed and destroyed.
The microvilli (little hairs) that make up the brush border have enzymes for this final part of digestion anchored into their membrane as membrane proteins. These enzymes are found near to the transporters that will then allow absorption of digested nutrients."
This is an extract from, 'Understanding Thyroid Disorders', by Dr A. Toft, - published in association with the BMA, which I had to show my own GP when disputing cut in medication:
"Judging the correct dose of thyroxine:
In some patients, a sense of well being is achieved only when ft4 is raised, for example 30 pmol/l, or 70 nmol/l, and TSH low or undetectable. In this circumstance, it is essential that the t3 level in the blood is unequivocally normal in order to avoid hyperthyroidism. "
"Thyroid blood tests should not be interpreted in isolation and correct medical care will also depend on careful assessment of symptoms and clinical assessment".
Hi Redrow. Just to let you know, there's and Endocrinology Department at Leciester Royal Infirmary. Just been referred and they seem very pleasant and didn't make me feel like a hypochondriac when I handed over a very long list of symptoms. Don't know about the quality of outcome because I haven't reached the outcome yet 😀.
You could try looking online to see if any of the Endocrinologists offer private appointments (it'll be at the Spire or Nuffield Hospital, Leicestershire).
First appointments usually cost in the region of £120, follow-ups a little less. However, some consultants are happy to then transfer you over to the NHS for tests etc. - some are not. It would best to ask if they can do this first since the blood tests rheumatologist do can be extremely expensive (potentially £100's each). And there's the added complication that if you start with private treatment, the NHS could, theoretically, refuse to accept you back for continuing treatment. So again, if you decide to go for a private appointment, best to ring the relevant consultant's secretary and ask the question about referral back to the NHS, if required.
Hope this helps and that you get sorted out soon x
Polaris Foggyme Sorry haven't been on for a while, thanks for your replies.
My GP referred me to an Endo at Queens Medical Centre but he would not see me as he only goes by the NHS guidelines so there was no point in having an appointment.
The Endo that the GP referred me to was a waste of time because he wouldn't see me as he had to go on NHS guidelines. So I paid privately at Spire Hospital, Oadby, Leicestershire and questioned his secretary beforehand so check that he would prescribe T3 and was assured that he would. Again, in my opinion, he was a waste of time and money £225.00. He felt my neck and said that I probably had no thyroid left (good that a diagnosis is so easy!) He wanted to know why I had stopped Statins as my cholesterol was now high (didn't give me any confidence at that point), I told him that it raised my blood glucose levels. He then went on to talk about diabetes and I moved him on from that as my diabetes is well managed. He didn't believe my weight loss (nearly 4 stones lost) and told me that I must have been very obese (I was size 16 clothes). He did weight me. He told me my Vit D and B12 were fine and didn't need supplementing. Back to the thyroid, his suggestion is that I stay on my current dose 100mcg for three months and then go back to see him (another £225), he will write to my doctor to tell him that. Be interesting to see what my TSH (as that's all they measure) is at my next blood test in December. All I got out of that was a 'free' cup of coffee and a depleted bank account.
First, do,you know what your B12 and vitamin D levels were...Medic's often say these are normal when they are not...bumping along the bottom of the scale is not good enough for some people. If you can get a copy of your results and the reference ranges and post them in a new post, people will be able to help,with interpretation. (If they were done privately, ask the consultant's secretary and if done by your GP, the receptionist will be able to print them out for you).
About the endo - well, what can I say. Sounds like quite a waste of time. And if all he's going to measure is your TSH, then your GP could have done that! At no cost to you.
Have you thought about getting a full thyroid panel done privately (would be cheaper than a private endocrinology appointment). The folks on the Health Unlocked Thyroid forum are very knowledgeable and could help with interpretation of the results. And I understand that some people there source and buy T3 (since it is becoming increasingly unavailable on the NHS). But best to seek advice there about these issues - much more knowledgable and will be able to offer more in the way of advice and information.
And about the private endocrinologist - there is no reason why he cannot transfer you to his NHS list, if he has a mind too. Though what you would get out of seeing him again is debatable.
And I fail to see how he can fully assess your thyroid status without doing a full thyroid panel (TSH, FT4', FT3 and thyroid anti-bodies - as a minimum) since TSH alone does not accurately assess true thyroid status (as the folks on thyroid UK would tell you).
It really might be worth asking your GP to refer you to the endocrinology department at Leicester Royal Infirmary. My GP referred me there and they did not seem to have a problem seeing me - and the GP's letter left a little to be desired because when I got there they were quite apologetic when they said 'we really arn't quite sure why you're here'. So much for GP referrals. But they still saw me. No mention of guidelines - which I obviously wouldn't have 'fitted' given the lack of clinical information in my GP's letter. Tested thyroid and adrenals, and then called me back for further tests (pituitary and parathyroid). Results tomorrow, as it happens, so we'll see.
Also - it's your absolute right to ask to be referred for a second opinion. Especially as the first one was so lacking. And more especially as the NHS hasn't even given you a first one 😖😱
Again, so sorry that so little cost you so much...in more ways than one. Disgraceful.
Please post again if there's anything else we could try and help you with....and we'd sure like to see those vitamin B12 and vitamin D results...
Foggyme Paid BlueHorizon for a blood test which is posted right at the top of my first post. Vit D - 65 nmol/L, B12 - 195 pmol/L on 16th August 2016. GP blood test on 5th October 2016 was Vit D - 101nmol/L, my B12 wasn't tested.
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