Hi all, I posted a few days ago and didn’t get a response so I thought I’d try again and phrase things differently. I am undiagnosed and had been debating whether to take some form of NDT or Metavive, but my latest blood tests confused me:
Mar 17
TSH 1.61 (0.27-4.27 mlu/l)
FT4 12.48 (12-22 pmol/l)
FT3 3.39 (3.1-6.8 pmol/l)
Jun 17
TSH 2.16 (0.27-4.27 mlu/l)
FT4 15.43 (12-22 pmol/l)
FT3 3.91 (3.1-6.8 pmol/l)
Sept 17
TSH 2.53 (0.27-4.27 mlu/l)
FT4 14.7 (12-22 pmol/l)
FT3 4.01 (3.1-6.8 pmol/l)
Oct 18
TSH 2.98 (0.27-4.27 mlu/l)
FT4 16.6 (12-22 pmol/l)
FT3 5.06 (3.1-6.8 pmol/l)
As you can see my TSH is rising, but so are my other levels. Very strange! Does anyone know why this would happen? I’m now wondering whether to put my NDT/Metavive trial on hold as my FT3 is above half way through the range.
You probably didn't get any replies because of the way you laid out your results. We need, ideally, to see the TSH, FT4 and FT3 together for each date.
March 2017
TSH 1.61 (0.27-4.27)
FT4 12.48 (12-22)
FT3 3.39 (3.1-6.8)
Like that. It's very confusing and hard on the eyes if we have to sort through those tightly packed numbers to find the results for any one date.
But, in any case, they are all for 2017, which really isn't relevant. You need some recent results for us to be able to help you.
Hi greygoose, thanks for that. Yes I can see what you mean. My apologies, I’ve edited my post to hopefully make it more readable. The last results was from October 2018 but I guess in the jumble I had it in you couldn’t see that! Hopefully it’ll make a bit more sense now.
Yes, that's much better! Now we can clearly see the rising TSH. However, the TSH is not a reliable test. For one thing, it depends on the time of day it's done. And there isn't a direct link between FT4/3 levels and TSH. They can go up and down slightly independently. Do you have high antibodies? They could have an effect on levels.
I had an antibody test early last year and it came back negative, but I haven’t had one since. The tests started last year were initially prompted by symptoms that my doctor thought was thyroid but it turned out that I was anaemic with ferritin and folic acid deficiency and low B12. Someone on this site suggested my thyroid might be beginning to struggle, but I decided to supplement for a year and see how that went. In the last couple of months I’ve felt rubbish again and thought that I might try Metavive 1 because of my low FT3. However, as you can see, my tests came back with raised FT3 and, despite supplementation, my ferritin and folic acid are very low again (although not anaemic). So now I’m wondering if blaming my thyroid is right and maybe something else is causing the vitamin deficiencies, god knows what though! I’ve been tested for pernicious anaemia and celiac disease and everything’s come back negative.
Well, your TSH is too high - you are very close to 3, which is hypo. And, all these tests are not definitive. The Coeliac test is notoriously inaccurate. Antibodies fluctuate - and you can have Hashi's without high antibodies. I think the pernicious anemia test is unreliable, too.
Are you supplementing for your low B12 and folate? Have you tried a gluten-free diet? It might help even if you don't have Coeliac. You could still be sensitive to gluten.
Yes I supplement with 1000ug of methylcobalamin daily and that seems to do the trick. My B12 levels are about 3/4 of the way up the range. I was just taking 5mg folic acid once a week but I’m going to up that to once a day for a month or so to try and up my levels. I also take a sachet of spatone a day but I think I need to go back onto ferrous sulphate for a bit to increase my ferritin.
I’ve been gluten free for a year, which I had hoped would help but it doesn’t seem to have made any difference. I’ve been dairy, soya and alcohol intolerant for about 6 years so I’m used to food issues.
Rather than increasing your folic acid, I would get a good B complex containing at least 400 mcg methylfolate. It's better absorbed than folic acid. And, you do need to take all the Bs together, because they all work together and need to be kept balanced. So, continue with the methylcobalamin, and add a B complex.
Yes I tried that and I reacted to one of the vitamins (B6 I think it was?), I ended up with electric shock like feelings all over my face, it was horrible, which is why I’ve stuck to the folic acid. It might be a good idea to change to methylfolate though.
Are you aware that blood tests for thyroid hormones have to be at the very earliest, fasting (you can drink water). If taking thyroid hormones you should allow a gap of 24 hours between last dose and test and take afterwards.
TSH - which is all doctors take notice of - in the UK they've been told not to diagnose until it reaches 10. In other countries it would be 3+. TSH is highest early a.m. and reduces throughout the day.
A blood test should also include thyroid antibodies. If antibodies are present we should be prescribed regardless of TSH and it would mean you have an autoimmune thyroid disease called Hashimoto's and should be prescribed.
Shaws, thanks, yes all tests were done between 7.30 and 8.30am fasting. I had antibody tests early in 2017 which came back as negative, but because of my continuing low FT3, FT4 I was told by someone on this forum about a year ago that my thyroid might be beginning to struggle. As I had anaemia and low iron, B12 and folic acid, I decided to supplement them for a year and see what effect that had. In the last couple of months I’ve felt rubbish again, despite supplementation, so thought maybe a trial of Metavive 1 might help. However now I’ve had my latest blood tests, it turns out my ferritin and folic acid are still low (but I’m not anaemia) and, despite my TSH rising, so have my FT3 and FT4. Does that make any sense? Does this finally rule out thyroid as my problem?
I am not medically qualified but had to do similar as many other members on this forum have to do, i.e. try this - that - and another. This is a previous post about Metavive which might be helpful for you.
You could try to source another NDT and I will give you a link to TUK that states the names of those that used to be prescribed in the UK and I think some private doctors might still do so.
However, many members source their own and you can put up a fresh post, if you don't have prescription, asking where you can source without and to send you a message. Your post will then be closed just in case someone posts on the forum and you should get a private message.
Thanks shaws that’s helpful. If I went down the NDT route I’d definitely have to source it myself as my doctor is absolutely adamant that my thyroid is fine. She can’t explain all the problems I’m having other than natural ageing (I’m only 52, but sometimes feel 82, my mum is in better health than me!!).
Isn't it strange - 'once upon a time' (before blood tests etc) all doctors knew the clinical symptoms of hypothyroidism - prescribed NDT which was increased gradually until we felt better. We were then hypothyroid. If NDT made no difference they obviously went down another route. Pity they know no symptoms these days as Dr Gordon Skinner (deceased) tried to do and arranged a Conference and invited all of the Endos (maybe others too) to discuss the parlous situation of patients. He, a virologist was being sent patients with 'mysterious symptoms' but undiagnosed and he found - due to symptoms - they were hypo and need hormone replacement. He was also kind in that if they didn't feel so good on levo, he prescribed an NDT or T3. NDT has been withdrawn through False Statements made about it by an Association who should know better as it had been prescribed for years - from 1892 in fact. People recovered as far as I know. The fact that they have now withdrawn T3, leaving no alternatives whatsoever seems to me to be a decision which shows an insensitivity to the suffering which we undergo. If the boot was in the other foot guidelines would soon change so that they could recover their good health and get back to work or enjoy a daily symptom-free life.
Fortunately, Dr Skinner's staff who were distraught by his sudden demise have been working for three years now collating all of the scientific evidence and are hoping to publish when funds are sufficient.
Yes I agree, everything I’ve read on this does indeed indicate that treatment of thyroid disorders has got worse recently. So much for modern medicine!
I think it is due to the reliance on a TSH level alone and not ensuring that both Frees are optimal as well as vitamins/minerals.
Hi jules it appears that your TSh is rising as it should to increase the output of thyroid hormones and your thyroid gland is responding by increasing the amount of hormone secreted. I am also a bit foxed as as you say your T3 is pretty good now. It does indicate some thyroid issues as your TSh should not really have to get as high as it is to persaude your thyroid to do its job properly but for extra clarity I wouldlike to know yourresting pulse preferably first thing in the morning and your temp, again first thing. Can you also provide a list of symptoms. I will have a look at your previous post.
Hi Mandyjane, I’ll take my temperature and pulse tomorrow morning and let you know what they are, but I generally have a low body temperature, that’s one of my symptoms. I get easily fatigued, am sometimes lethargic, have food intolerances, am chemically sensitive and have generalised aches and pains. I become anaemic, folic acid deficient and struggle with B12 unless I supplement, my sex hormone levels were low until I started using natural progesterone and oestrogen cream, I have dry skin and dry eyes, and recently my cholesterol has gone above normal limits despite exercising regularly and having a healthy diet (I’m a normal healthy weight, not overweight). I also always seem to be coming down with a cold or virus. Don’t know if this is connected but I’ve also recently had mild hearing loss diagnosed. I think that’s it.
Hi I have had a look at your previous post.I am assuming your are either a man or post menopausal women. This would indicate poor absorbtion of vitmains and minerals consistant with thyroid issues, especially considering supplementation.You may want to drink a small glass of dilute cider vinegar before meals or some betaine capsules to increase digestion and some vitamin C . I am also wondering if you are zinc deficient as this can effect hearing it is often indicated by white spots on the nails. I would still like toknow your temp and pulse but I suspect getting your nutrician right will be a losing battle untill you start to take some thyroid hormones.
Hi there, I’m a 52 year old woman, who is still menstruating, sorry! I don’t have white spots on my nails and I have considered cider vinegar before, I keep meaning to buy some but it’s one of those things I keep forgetting. I’ll let you know my pulse and temperature tomorrow.
Hi mandyjane, my temperature on waking this morning was 36.28 deg C. Which is actually pretty good for me, I’m quite often down at 35.5 and sometimes it dips down to 35. My pulse was 66.
The colestoral being raised is indicative of thyroid issues and I beleive at one time was the blood test used to diagnose thyroid problems. Itis apparently the raw product of all hormones and the body produces more of it when certain hormones are low.
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