I don't post very often as having had the radioiodine treatment for hyperthyroidism, I thought that my position was now permanent and I only needed the annual thyroid function tests my doctor (new this year) takes every year. I may still do.
My recent health has though taken a nosedive with ridiculous weight gain: I'm nearly 20 stone (127kg or 280lbs) now having been a manageable 16 stone (101kg or 224lbs. Ironically, before I was diagnosed, I was the fittest I've been in my adult life, but the symptoms became too much to ignore. I'm 61 year old male with B12 deficiency, for which, much to chagrin all of my doctors', past and present, I self medicate by injection of 1mg per month. Over the past two years I've developed mild depression (maybe pandemic-related?) and most persistently, an almost continuous brain fog. I've repeatedly asked my doctor to investigate this and very reluctantly, angrily even, he referred me for a brain scan to investigate, at my suggestion, MS. The results though suggest that there is evidence of a previous bleed, which isn't good, but if it were an ongoing stroke, then I'm sure they'd've called me back more promptly for a follow up scan and treatment. As it is, I return at the end of this month for another, I assume, more focussed brain scan. I also suspect that the bleed may date back two years when I had a tympanoplasty to close a hole in my ear drum.
I'm aware that I need to see the results of the scan first before tackling my doctor again about the brain fog, but does my Levothryoxine dosage of 150mcg/day X 3 days a week and 125mcg/day X 4 days a week sound about right? Should I look into T3 testing too and if so, what may be the virtue of that? Perhaps a question for the Persistent Anaemia group, but is there any relationship between thyroid function and B12 deficiency? I've suspected B12 deficiency related neuropathy as a cause of the brain fog as it feels very similar to the brain fog I suffered prior to B12 deficiency diagnosis. I take daily folate too. I also have a gluten free diet after being diagnosed with Food-Related Irritable Bowel Syndrome some years ago. I progressively removed foods from my diet until wheat and wheat gluten was identified as the culprit. As far as I know, I'm not coeliac. don't post very often as having had the radioiodine treatment for hyperthyroidism, I thought that my position was now permanent and I only needed the annual thyroid function tests my doctor (new this year) takes every year. I may still do.
My recent health has though taken a nosedive with ridiculous weight gain: I'm nearly 20 stone (127kg or 280lbs) now having been a manageable 16 stone (101kg or 224lbs. Ironically, before I was diagnosed, I was the fittest I've been in my adult life, but the symptoms became too much to ignore. I'm a 61 year old male with B12 deficiency, for which, much to chagrin all of my doctors', past and present, I self medicate by injection of 1mg per month. Over the past two years I've also developed mild depression (maybe pandemic-related?) and most persistently, an almost continuous brain fog. I've repeatedly asked my doctor to investigate this and very reluctantly, angrily even, he referred me for a brain scan to investigate, at my suggestion, MS. The results though suggest that there is evidence of a previous bleed, which isn't good, but if it were an ongoing stroke, then I'm sure they'd've called me back more promptly for a follow up scan and treatment. As it is, I return at the end of this month for another, I assume, more focussed brain scan. I also suspect that the bleed may date back two years when I had a tympanoplasty to close a hole in my ear drum.
I'm aware that I need to see the results of the scan first before tackling my doctor again about the brain fog, but does my Levothryoxine dosage of 150mcg/day X 3 days a week and 125mcg/day X 4 days a week sound about right? Should I also look into T3 testing and if so, what may be the virtue of that? Perhaps a question for the Persistent Anaemia group, but is there any relationship between thyroid function and B12 deficiency? I've suspected B12 deficiency related neuropathy as a cause of the brain fog as it feels very similar to the brain fog I suffered prior to B12 deficiency diagnosis. I take daily folate too. I also have a gluten free diet after being diagnosed with Food-Related Irritable Bowel Syndrome some years ago. I progressively removed foods from my diet until wheat and wheat gluten was identified as the culprit. As far as I know, I'm not coeliac.
Finally, I feel that I should take a comprehensive set of private blood tests (with commentary) as a second opinion to my annual thyroid function testing and other throw away diagnoses from my doctor - he blamed the brain fog on depression and has been studiously quiet since revealing the result of the brain scan I insisted on having. I knew something was wrong with my head. I'm fairly clear where to get these tests, but what should I have tested? Incidentally, I have COVID at the moment and am aware that I should defer such testing for a while and until after I'm clear of C19.
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CyclingDog
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does my Levothryoxine dosage of 150mcg/day X 3 days a week and 125mcg/day X 4 days a week sound about right?
I'm afraid it's impossible to say without seeing results of a thyroid function test. We are all different in our needs.
The NICE guidelines do state that in some cases a starting dose 1.6mcg Levo per kg of body weight can be used, which in your case would be around 200mcg per day. However, this is a guide to starting Levo with adjustment made as necessary for the individual so it is not set in stone and it's not something I like to consider, I think starting low and gradually building up to required dose is a better way. We need what we need and the guidelines do back this up.
Should I look into T3 testing too and if so, what may be the virtue of that?
Absolutely, Free T3 is the most important test. T3 is the active hormone which is required by every cell in our body. T4 has to convert to T3 and we're not all good at that so if we have poor conversion we need to do something about it.
Finally, I feel that I should take a comprehensive set of private blood tests (with commentary) as a second opinion to my annual thyroid function testing and other throw away diagnoses from my doctor
Definitely do a full thyroid panel with vitamins. Both Medichecks and Blue Horizon do this test bundle and the key nutrients tested are Vit D, B12, Folate and Ferritin. Obviously testing your B12 isn't necessary as you self inject but it's part of the bundle and the others are necessary, they're all important and need to be at optimal levels for thyroid hormone to work properly and low levels/deficiencies bring their own symptoms which can overlap with symptoms of hypothyroidism.
Both tests include the full thyroid and vitamin panel. They are basically the same test with just a few small differences:
Blue Horizon includes Total T4 (can be useful but not essential). Medichecks doesn't include this test.
B12 - Blue Horizon does Total B12 which measures bound and unbound (active) B12 but doesn't give a separate result for each. Medichecks does Active B12.
Total B12 shows the total B12 in the blood. Active B12 shows what's available to be taken up by the cells. You can have a reasonable level of Total B12 but a poor level of Active B12. (Personally, I would go for the Active B12 test.) However, as mentioned, this test is not important as you self inject.
Blue Horizon include magnesium but this is an unreliable test so don't let this sway your decision, it also tests cortisol but that's a random cortisol test and to make any sense of it you'd need to do it fasting before 9am I believe.
Their doctor's comments really aren't worth having. The doctors will be NHS trained and their comments will be the same as any GP's. You will get the best interpretation of your results here on the forum. Also, whatever your results are and whatever the comments say, there is no guarantee that your GP will accept these results, many GPs dismiss them because they haven't carried them out themselves and say the labs aren't reliable, but the labs are accredited just the same as NHS labs. Some GPs do accept them but many don't.
My reply to you 2 years ago still stands and once you have the results of a full thyroid panel to include TSH, Free T3, Free T4, antibodies, inflammation, ferritin, folate, B12 and vitamin D - just post on here, with the ranges and you will be talked through anything that needs actioning.
Well that cheered me up. Odds are however that it will not be that, but in all seriousness thanks for posting it as it adds to the armoury of possibilities with which to challenge and annoy my unreceptive GPs.
Well you need to be aware and start to read up and become your own best advocate :
Most if not everything you have described can be attributed to primary hypothyroidism and not being optimally medicated.
There are a full list of symptoms of both hyperthyroidism and hypothyroidism on the Thyroid UK website who are the charity who support this forum and where you will also find details of all things thyroid including the list of private companies who can action all the blood tests for you if your doctor isn't able to.
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