Please find above my lab results from Blue Horizons along with the doctors notes which are posted below.
It seems from the results and the notes that my B12 levels are pretty high and not low as indicated in my last blood test from my doctors which is a bit confusing.
I have been taking the supplements that where recommended here for about a week so I guess I should stop those now.
Any info or help that could make my life better would be greatly appreciated.
Thanks again for taking the time to look and my results and note's.
Best Wishes
Garry
Doctor Comments
The thyroid function is currently normal. The positive thyroid antibody result, however, increases the possibility of your having autoimmune thyroid disease, such as Hashimoto's thyroiditis or Grave's disease.
A high CRP (C reactive protein) is associated with inflammation from some cause (as seen for example with arthritis or infection). It is not an exact test, and is nonspecific. An elevated CRP is not a normal finding and its presence should lead to further investigation to establish the cause. It would be sensible to repeat this test around 4-6 weeks’ time as it may just be a temporary rise. If persistently elevated it would be sensible to discuss this finding with your doctor.
The Vitamin B12 level is elevated. This is not likely to represent significant overdose, as B12 is well tolerated by the great majority of people – even in very high concentrations (as indeed are most water soluble vitamins). Excess levels are usually a result of supplementation or from following a diet rich in the vitamin. A few exceptions to this rule include those who suffer from a rare hereditary eye complaint known as Leber’s disease. Too much vitamin B12 in these individuals can lead to damage of the optic nerve, which might lead to blindness. Anyone who is allergic to cobalt should also avoid taking vitamin B12 – as the vitamin contains a significant amount of this element. Rarely, high dose supplements or injections of Vitamin B12 cause diarrhoea, itching, blood clotting and allergic reactions. Liver disease and myeloproliferative disease (disorder of the bone marrow) can lead to elevated levels of B12. However, some practitioners advocate high doses of Vitamin B12 to help sufferers from Chronic Fatigue Syndrome (CFS) and to combat the development of Alzheimer's disease, amongst other conditions.
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 - which of course is the case here - if a high Folate level is detected.
Hi
I've recently started using this excellent resource and after 7 years of struggling with lots of symptoms I feel at last I may get some help from this site.
I was diagnosed with an under active thyroid around 7 years ago after being misdiagnosed with depression for quite a number of years, during that time I went from being a very fit and healthy 11.5 stone man to a bed bound 22 stone invalid at this point I could barley walk and didn't recognise myself in any way at all..
It took around two years to recover to some degree after I was diagnosed and slowly I lost around 7 stone and I started to become myself again.
For the last five years I have been taking 150mg of Thyroxine.
For the last two years I have felt I am starting to go backwards again whenever I bring this up with my GP I am told my levels are fine and that I don't need an increase in my meds.
I try to keep active I swim twice a week and go to the gym three times a week but both leave me feeling quite worn out a tired, I quite often hit a wall of exhaustion at around 4pm where I could easily just go to sleep.
I sometimes find it very hard to think things through and feel quite forgetful.
I'm a 51 year old male.
My last blood results where:
Serum TSH 1.4 miu/L
Free T4 18.2 pmol/L
Serum B12 318 ng/L
Serum Folate 8.4 ng/ml
Serum Ferritin 102 ng/ml
Serum Calcium 2.42 mmol/L
Would it be possible for someone to look at these and maybe give me some pointers on how to get my life back on track again.
Thanks for taking the time to read my post.
Garry
Written by
GazG
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GazG Hi Garry. Do you have the reference ranges for your results please? If so can you edit your post (click the down arrow, choose edit, make your changes, then 'edit response' which is the green button at the bottom of your message. It's not possible to give accurate comments if we're just guessing but going by ranges we frequently see (although they do differ from lab to lab) your TSH isn't bad but not sure of your FT4, it could be top or mid range.
The aim of a treated hypo patient is for TSH to be 1 or below and FT4 and FT3 at the upper end of their ranges, depending where you feel best and your symptoms alleviated.
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, wrote this in a Pulse Online magazine article:
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
If you email louise.roberts@thyroiduk.org.uk she will let you have a copy of the article which you can print out and discuss your GP.
What you really need is a FT3 test, that being the active hormone which every cell in your body needs. I would bet that yours is low. Your exercising will deplete what T3 you have so it might be an idea to stop for now, maybe gentle exercise like walking instead, and let's see where your FT3 level lies.
Depending on the range for FT4, it could be that you have enough T4 (the storage hormone) but it's not converting well enough to T3. Your GP may agree to do it but ultimately it's down to the lab, they seem to make the decision and frequently wont do it unless there is something seriously amiss with TSH or FT4. You could get a full thyroid panel privately through Blue Horizon and this may be the way to go. It will test TSH, FT4, FT3, both thyroid antibodies (useful to know if your hypothyroidism is caused by autoimmune disease aka Hashimoto's).
Always make sure that any test is done first thing in the morning (as early as possible), fasting (water only since last evening meal) and leave off Levo for 24 hours.
Vit D is very important and if you don't get the Plus Eleven test then you can get Vit D tested through City Assays vitamindtest.org.uk/ for £28, an easy fingerprick blood spot test.
Once you have these members can comment and make suggestions.
It's not possible to comment on ferritin as ranges differ so much, but it needs to be half way through range whatever that may be.
One thing that is blindingly obvious, without the reference range, is your B12 is low. Anything under 500 and there's a risk of neurological problems. The Pernicious Anaemia Society recommends 1000. You can supplement with Solgar or Jarrows sublingual methylcobalamin lozenges which you dissolve under the tongue for absorption directly into the bloodstream thereby bypassing the digestive system. Start with 5000mcg daily for 3-4 months which should get your level up near the top of range, then reduce to 1000mcg daily as a maintenance dose.
When taking B12 we should take a B complex to balance the B Vits. Be sure to get one with methylfolate rather than folic acid. Folic acid is synthetic and needs to be converted by your body to folate.
Unfortunately there's no knowing whether your folate level is low without the range but it should be at least half way through it's range, and normally it's recommended to take Thorne Basic B or Jarrows B Right, both of which contain 400mcg methylfolate which would help increase low folate level.
GazG How strange that your B12 should be so much higher with Blue Horizon. The units are different but when you do the conversion you multiply the pmol/L by 1.355 to get the ng/L and it is still a lot higher.
As B12 needs to be at the top of it's range I would suggest that you go on to a maintenance dose of 1000mcg methylcobalamin sublingual lozenges and maybe take a few times a week (along with the B Complex to keep B vits balanced) and see how that goes. Your folate is high but apparently that is fine when B12 is high.
Ferritin is almost halfway through range so that's OK.
Vit D could do with a nudge. Recommended is 100-150 so you could take a D3 supplement of 2000iu daily throughout the winter. Retest through City Assays (unless you're doing another BH test to check other levels) in about 6 months to ensure you haven't gone too high. City Assays say that 220+ is toxicity level so you should aim to keep within the 100-150 recommended. The body doesn't excrete Vit D like it does the B vitamins, it gets stored so we have to be careful.
When taking D3 we also need K2-MK7. Vit D aids the absorption of calcium from food and K2 directs it to bones and teeth rather than arteries and soft tissues. It's also recommended to supplement with magnesium (another cofactor) when taking Vit D, most of us need it anyway.
You can get a D3/K2 combined or go for separate supplements.
As both D3 and K2 are fat soluble they need to be taken with dietary fat such as the fattiest meal of the day.
CRP is elevated and as explained by BH there could be inflammation or infection causing this.
As for your thyroid tests:
TSH: 1.7 (0.27-4.2)
FT4: 18.78 (12-22)
FT3: 5.25 (3.1-6.8)
These, theoretically, are amost perfect. FT4 should be in the upper third ie 18.67+ and FT3 should be in the upper quarter ie 5.875+ and TSH should be 1 or below or wherever needed for the FT4 and FT3 to be in the upper part of their ranges. Your conversion is good so no worries there.
What you have discovered though is that you have high TPO antibodies and are therefore positive for autoimmune thyroid disease aka Hashimoto's. There is no "possibility of your having autoimmune thyroid disease" as BH says, they are over range, not by much but definitely over. Once you have them they don't go away. Symptoms (and test results) can fluctuate with the antibody attacks.
Hashimoto's isn't treated, it's the resulting hypothyroidism that's treated. The antibody attacks will eventually destroy your thyroid so, when you have Hashi's the best thing you can do is try to reduce the antibody attacks.
1) Adopt a strict gluten free diet. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. Many members have found this helps enormously. Some also need to be dairy free.
2) Supplementing with selenium can help reduce the antibody attacks. Look for selenomethionine.
3) Keeping TSH very low or suppressed helps reduce the attacks and as yours is 1.7 it might help to bring that down a bit. You have room to allow your FT4 and FT3 to increase so a small increase in your thyroxine should hopefully reduce your TSH to below 1 and still keep your FT4 and FT3 within range. An increase of 25mcg, or even 12.5mcg might do this but with your results I'm not sure how you will be able to persuade your GP to do this.
Sorry for my late reply I was working until late yesterday and only got a chance to peek at your reply.
Thanks for all of you fantastic info I will go through the links as soon as I get a chance.
I am virtually gluten free anyway so cutting out what I do take wouldn't be to much of a problem for me so I'll give that a try along with the supplements that you recommend.
I drop by in the future to let you know how I'm doing.
Hi Garry, typical that doctors blame the patient and excuse their own lack of knowledge about this condition making your own life miserable. Susie gave a thorough response and getting that FT3 number would be very telling. If it is very low, this means you are not converting your T4 (levo) to FT3 which is the form that can enter cells and activate your metabolism. You could also have another problem even if you have good conversion and that is resistance to the T3. This can be due to your adrenal function. These glands determine much about your energy.
Since you have tested B12, you should start supplementing now. If you cannot get the proper tests done, go ahead and move forward with Blue Horizon as Susie suggests and decide you are not going to allow your health to deteriorate over the bureaucratic nonsense of the medical profession. Careful of the exercise as it will use up the meager T3 I'm assuming you have.
Just a tip Garry, doctors don't like us to understand our medical conditions, they like us to nod like a Churchill dog and say "Yes doctor, no doctor, three bags full doctor, you know best doctor". And if we take anything for them to read that we've printed off the internet it's generally like a red rag to a bull.
The best thing to do is start off by saying that you saw that NHS Choices website links to Thyroid UK (this is TUK's forum) as a source of information. This is quite true although it is on their page for overactive thyroid but your doctor won't know that and there's no need to mention it 😉 nhs.uk/Conditions/Thyroid-o...
Rather than say you've been on a forum and this is what the members say, phrase it as though it is information from Thyroid UK. Paraphrase the information rather than show her the actual posts. You can, of course, visit ThyroidUK's main website and print off any information you think valid.
Just be aware that you may get shot down in flames. Don't expect your GP to know anything about nutrition, optimal levels of vitamins and minerals or even optimal levels of thyroid hormone, or even the importance of FT3. They're just not taught it. There is a wealth of knowledge between the various members on here who have all gone through similar scenarios to yours. Their collective knowledge through their various experiences far outweighs any knowledge that the average GP and most endos have.
There's no need to hold off on the B12 supplement. Your level is not low enough for your GP to do anything about it, she will just say it is normal. You know it is not. Even if you showed her evidence from the PA Society about their recommended level you won't get anywhere unless your level is below range and needed injections. Yours is low but not low enough for that.
I don't really know if your frequent infections are anything to do with your thyroid.
I can't comment on your kidney infections nor diverticular disease. How bad was your pneumonia? Were you hospitalised for treatment? I have had pneumonia this year (and had the pneumonia jab three years ago but it doesn't cover all strains) but I have a lung disease so my lungs are weak. Fortunately it was mild and a week's worth of Amoxycillin did the trick.
As for your frequent colds or flu you should try to boost your immune system, as well as have optimal levels of the vits and mins already mentioned. I have to do everything I can to avoid infections so besides avoiding people with colds, coughs, etc (friends and family know how bad it would be for me to catch their infection and are understanding when I ask them not to come when they have one), I have a few things I do to help which might help you too.
First of all - Vit C and plenty of it. Minimum 2000mg per day, maybe even 3000-4000mg, spread throughout the day. If you take it all together it will have a laxative effect. If you do have a cold then megadosing can help shorten the time you have it.
Garlic supplement, and a good one, preferably one with Allicin. I used Allicinmax capsules but now use their liquid version allicin.co.uk/section.php/1... (you don't have to buy from there, other places do it). You can megadose with the capsules if you get a cold.
Homeopathic remedy Oscillococcinum during the winter months. I get mine made up by a homeopathic pharmacy and take 1 pill on the first day of the month from October through to April (yes, just one pill a month). I just ring them up and they post them out to me. I don't remember the last time I had a cold.
If you do feel a cold coming on you can use Sterimar amazon.co.uk/Sterimar-Aller... That helps wash out any germs in the nasal passages.
The best thing to do is start off by saying that you saw that NHS Choices website links to Thyroid UK (this is TUK's forum) as a source of information. This is quite true although it is on their page for overactive thyroid but your doctor won't know that and there's no need to mention it 😉 nhs.uk/Conditions/Thyroid-o...
The link to this forum is on the underactive thyroid page as well.
Thanks HB. I did see that but that's just the forum. On the over active page it's actually under 'Useful links - External links - Thyroid UK', and as it's direct to TUK's website that might hold a bit more sway than a forum
I can't remember who first mentioned it, possibly one of the admin. Really useful to know, we can say 'NHS Choices recommends Thyroid UK for information' and doctors can't really argue much about that 😂
Garry, There is some problem with vitamin D for some people. Have you tested it? I've tried all forms and it should be joined to vitamin K since your calcium levels may raise when taking D and the K will direct calcium to bones instead of soft tissue. It doesn't seem to get to an optimum level for some people but if you can it does protect from infections and cancer. You could look into it later at some point.
Garry, Your thyroid levels look excellent but of course that may not be telling the story. Your C RP is concerning and your antibodies are edging up. Inflammation often causes the c reactive protein to raise. Here are some things you can do:
Thanks for your reply and help I will go through that link as soon as I can..Maybe the inflammation is in my joints as I seem to aching a lot recently.
Thanks again for you detailed & yet again informative posts.
Within a short time of making my last post I had already decided to follow your advice & get the bloods done myself.
I have frequently met the wall of do as your told & take your thyroxine(150mg) your levels are fine...so why even go back there
I will order my tests in the morning & post back here as soon as I have the results.
In the meantime do you have a source for the B12 supplements I'll get those started as soon as possible.
I think I read here there was a discount for forum users for blue horizon, could you please point me towards the coupon/code I need if that is the case.
Dexter1 my last thyroid function test was last February.
Once again thank you all for your time.
At last I feel there's some light at the end of the long tunnel I've been stuck in for years.
GazG, I'm afraid that the people you are responding to, will not see your response if you don't click on the Green 'Reply' button, under their post. If you do that, they will get notification of your response. If you just reply in the main body of the thread, they won't get that notification.
The best source of B12 supplements is Amazon. There's plenty of choice and reasonable prices. You need sublingual methylcobalamin for the B12, and a B complex with methylfolate, rather than folic acid.
Thanks for your reply and also putting me right on the replying separately to each of my replies..I'm used to replying at the end of each thread for all to see.
Thanks for you recommendations regarding Vitamin B12 I'll take a look soon.
GazG As Greygoose has mentioned, I haven't had notification of your reply because you didn't reply in my message box. Another way of letting the member know is to put @ directly in front of their user name (no space) and member's names will come up and you click on the one you want, that then turns their name blue and an alert is sent to them that they have been mentioned
When you know the range for folate come back and we can suggest which B Complex might be right. If it's low then just look for either the Thorne Basic B or Jarrows B Right as mentioned.
If you're going for the fingerprick test through the link I put for the BH plus 11 then there is no code as the prices were reduced not long ago. The code is for when doing tests through Spire or Nuffield hospitals.
So sorry you didn't see my earlier replies and tahnks for the links I will order soon and get the bloods done during the week as soon as I get the results back I will be posting them here.
Sorry to hear you've been having a rough time. Along with all the excellent advice above it may be worth investigating food sensitivities. Many people have them and are not aware of it, the most common being gluten. The Paleo Autoimmune diet cuts out most common problem foods, so it's worth trying to see if your symptoms improve. Excluded foods can then be added in one by one to test for reactions:
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