My doctor recently signed me off for 6 months until next blood test as he is happy with my results on 100mcg of levo. The lab refused to test free t4 (but I think it was about 15.5 last time) as TSH was low (it was 1.2). Anyway, I always imagined that with a TSH of 1.2 i'd feel great, not swinging from the chandeliers or anything, just raring to go and ready to get back out there in terms of living my life with energy. But the truth is that I still feel rough (sigh). Does anyone else have this issue? Maybe I've not given it long enough... only been on this dose for about 6 weeks.
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momo33
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Hello - did you get your vitamin and mineral levels tested like what was suggested in a replies to your last post? If so post the results and ranges.
Low or inadequate levels of ferritin, folate, vitamin D and vitamin B12 can lead you to feeling carp because your thyroid hormones cannot work effectively.
(sigh). I tried, but the doctor rushed me out. He was in a foul mood and I could barely get a word in edgeways... I think he wanted rid of me! Maybe I should just make an appointment with the nurse for a blood test or go back and see him again. I am taking supplements: iron, vitamin D and B12. Sorry to sound like a moron, but what is folate? Is it iron?
1. Too much iron and too much vitamin D are TOXIC. Until you have been tested DO NOT take any of these supplements.
2. Any vitamin B12 or folate supplements will distort any blood tests you have.
If the doctor refuses to test you then unfortunately you are going to have to get tested privately. Most people find the Blue Horizon Plus 11 finger prick test adequate for their needs - thyroiduk.org.uk/tuk/testin...
hi bluebug, thanks for your reply. The reason I am taking iron is because my ferratin was 5 a year and a half ago. So I guess I figured that it wouldn't be too high now (as I have heavy periods to deal with as well). I take a vegetarian mutivitamin because I am veggie, and I think veggies are low on b12? I think I'll go back to the doctor and ask him to do these tests.... then I can post my results here.
If your ferritin was under range your GP should have tested you within 6 months of prescribing iron tablets. If he hasn't then please go back to the nurse and convince her to test you for it.
Multivitamins are a waste of money as they don't contain enough of each type of vitamin if you are deficient, so they aren't recommended on here.
Also don't be surprised if your GP refuses to test you for the things you need including ferritin, or misleads you and just does a full blood count. This because tests come out of their budget for all patients and they only have a legal duty to prevent you getting so chronically ill you have to go to A&E to be treated.
Hi bluebug, that is so weird... that is exactly what he did! Last time I saw him he had done a full blood count and said that I was fine. He never retested my ferritin! Okay, well it's pretty clear that I need to go back for more tests. I am veggie so that I why I take a multivitamin, but it has iodine in it which worries me sometimes... as it;s not supposed to be good for thyroid health. Do you take supplements on their own rather than a multivitamin?
momo33 I know this due to the tricks my last GP pulled on me and the people I know socially.
In regards to the supplements - once you have been tested if you need supplementation take individual supplements.
The only exception are B vitamins IF your levels are near optimal then you can take a vitamin B complex. However you shouldn't take one aimed at women and the amount of each vitamin needs to be greater than the RDA. B complexes aimed at women don't balance folate and vitamin B12 which everyone needs.
thanks for explaining, bluebug. I had no idea that multivitamins weren't okay. I think I need to go through my vitamin cupboard and sort everything out! I just thought that supplementing everything would be a good idea, but clearly I was mistaken! As for the blood test, I did think it was a bit odd that the doctor said that I wasn't anemic, considering that my ferratin was 5 three months earlier..thanks
He could have simply asked the lab to test ONLY haemoglobin and ONLY ferritin if he wanted to save money. My GP did that the last time I turned up with private lab results showing I was iron deficient but my other tests were adequate.
Ferritin is a storage protein that stores iron while haemoglobin, which was measured in the full blood count, is the iron containing protein that takes oxygen around the blood.
So you can have adequate haemoglobin e.g. a level at or above 12g/dl but low ferritin as your body needs to ensure oxygenated blood gets around the body. In this case you have non-anaemic iron deficiency and can go on to develop iron deficiency anaemia. Link - patient.info/doctor/non-ana... (You can print this out and show it to him.)
You can have low haemoglobin and low ferritin. In that case you will have iron deficiency anaemia.
You can have adequate haemoglobin and high ferritin - in that case you may have an infection, inflammation or less commonly another disease.
You can have adequate haemoglobin and adequate ferritin.
yes, that makes sense... thanks. He just sort of waved away my iron concerns. I haven't actually taken his iron tablets (for other physical reasons of a unpleasant nature I can't tolerate them.. consipation is not my friend). I have been taking my own for 18 months now, which is 25mg a day. I wonder now, in hindsight, if that has been enough to improve my ferritin. I am going to book an apointment on monday to get new blood tests done!
Yes, sadly I think you are right. This is the best gp I've had, and even he seems keen to see the back of me... I think he feels a bit confused about thyroid issues actually.
I had under range ferritin but wasn't technically anaemic - if I'd waited another year of so, I probably would have been - your body uses up all your ferritin (iron stores) to stop you from getting anaemic - and you have to be blatantly anaemic for NHS to admit it.
that's interesting... I do feel like I have anaemia symptoms sometimes, including the palpitations that I had after childbirth when they said I was anaemic! I will get it tested and see. Has your ferritin improved now?
You can't OD on B12 as it is water soluble, but it's a good idea to get D tested and ferritin again - although it would take most people much longer than 18 months to get to a decent level from 5 if still menstruating. so no need to panic. GP won't prescribe B12 unless you are half dead with deficiency and under NHS's pathetic range, so I wouldn't really worry about getting it tested.
that's great, thanks for your reply Angel of the North! Yes, I suppose what I could be feeling is iron deficiency symptoms. I guess it will take longer than 18 months for it to reach a decent level and I do have heavy periods as well which won't help. I will post my results when I get them and see what everyone thinks!
Folate is one of the B vitamins - B9 - which works in tandem with B12.
You shouldn't really have started taking B12 without getting tested. You need to know what your level is so that you know how much to take. Now, you'd have to come off B12 for four months to get a true result. Which B12 are you taking? And how much?
Also, if you are taking B12, you should be taking a B complex, to keep the Bs balanced. Get one with methylfolate, because it is easier to absorb than folic acid.
You can still get your vit D and ferritin (protein that stores iron) tested - and you should, because you need to know if you're on the right dose.
With the iron, it's a good idea to take 1000 mcg vit C, to help with absorption. And with vit D3, you should be taking vit K2. Taking D3 increases absorption of calcium from your food, and K2 makes sure it goes into the bones and teeth, and not the tissues.
Just because your TSH is in a reasonably good place - could be lower - doesn't mean that your FT4 and FT3 are high enough to make you well. In fact, the TSH is irrelevant once you are on thyroid hormone replacement.
It could be that you aren't converting your T4 to T3, but you will only know this if you get them all tested. Unfortunately, that costs the NHS money that they don't want to spend! So, it would be a good investment in your future if you got all the tests you need, done privately. Details of private testing on TUK main page. Perhaps it's time to take charge of your own health.
hi greygoose, thanks for your kind reply. I am taking B12 (cyanocobalamin- no idea what this means) 100mcg a day. It is part of a vegan herbal multivitamin I take (DEVA iron free vegan multivitamin). I will order a B complex now as it has no B9 in it, only B1, 2, 3, 5and 6. That is helpful about the vitamin K2. I will look into getting some of that as well. Yes, the doctor said that T3 was not a test that was run by the lab and that they would refuse to do it. So, getting it done privately is a good suggestion...
I'm sorry, I'm confused... why would you want a B complex without B9? B9 is folate, and you can have two versions : methyfolate (natural) or folic acid (synthetic). I was saying you want the methyfolate because is it more easily absorbed. But you do need folate in the B complex.
OK, so you can have the B12 test, because what you've been taking is about as much use as... fill in your own comparison. You will not have absorbed any of it, probably, and even if you have, 100 mcg is such a small dose, it's not worth mentioning! But, don't take anything else until you've had the test.
As for the DEVA iron free vegan multivitamin, I think you should give that up right away. It's pretty dire. It contains the cyanocobalamin, too. No point in taking it. And, it has folic acid.
Plus it contains magnesium oxide and zinc oxide - you can't absorb those, either, so you're really not getting much out of it, are you.
And it contains things you don't want:
a) calcium : calcium supplements are a really bad idea unless you're absolutely desperate for calcium - and even then, there has to be a better way. Calcium supplements can collect in the tissues - there's no K2 in that supplement to direct it into the bones - and cause a heart attack or kidney stones.
b) iodine : when you are hypo, it is really not advisable to take iodine. There's 150 mcg in one tablet; and you're getting 60 mcg from your levo: plus what you get in your food... You really are at risk of over-dosing on iodine, and that's not a good thing to do.
c) copper : you're more likely to have high copper when you're hypo. You should really get tested for that before taking any.
As a general rule, avoid multivits. They're a waste of money because you get very little out of them - and they could cause problems by making you over-dose on some things, like iodine. It's much, much better to get tested, and just take what you need.
(intake of breath) Okay. Thanks, greygoose. The multivitamins are hitting the bottom of the bin right now.So, I will take separate supplements and will get tested to see what I'm deficient in. I have seasonal effective disorder and was told to take vitamin D by the nurse, so I am on that already. I had no idea about the danger of copper and calcium.... thanks so much for all the info!
Yes, gabkad asked a very good question : how long have you been taking the multivit?
The nurse was very wrong to tell you to take vit D without testing it first. How does she know what dose you need? You can also over-dose on vit D. It's fat soluble, so collects in the fat cells. They really have no idea!
If she's been taking it for more than a year now, then probably unless she's got some serious malabsorption problems, her blood levels are 'probably' okay. Maybe not stellar though. Worth checking given that she's probably been hypothyroid for a while.
Oh, absolutely. I did say to test vit d, vit B12, folate and ferritin before taking anything. What worries me is the possible over-dosing of calcium, iodine and copper. They could be causing symptoms.
Usually, if a multivit/mineral supp contains copper it's maybe 1 mg. Not enough to cause problems. I have not checked the contents of the one she is taking though.
150 mcg is the amount an adult needs per day - assuming she's not pregnant. But, momo is also getting 60 mcg from her levo. Plus whatever she gets in her food. That seems like too much to me - especially with a malfunctioning thyroid to use it up.
I would suggest you try and get your copper tested. As I said, hypos tend to have high copper, which makes the zinc low. I looked into it because I took zinc, and thought I should take copper, as well. The copper made me feel bad. So, I gave it up and just took the zinc. You probably don't need any more copper than you've got.
Well, don't expect any help from your doctor, he will be happy if they are just crawling along the bottom of the range. Doctors do not understand the concept of 'optimal'!
Hi gabkad, thanks for the reply. I have been taking it for 18 months now and the iron too. After about 3 months my ferritin had gone from 5-15, which doctor said was 'perfect'. I was in a bad way before I started taking the multivitamin. I had a warts virus and was run down... warts all over my hands and on my face. I was a wreck. I guess I assumed that it was the multivitamin that helped me (they have all cleared up now), but maybe it was the iron.
15 is certainly not 'perfect'. Iron is needed for the enzymes in the mitochondrial membranes. It's not just needed for hemoglobin. If iron is low then energy is low because mitochondria are the powerhouses of cells.
Thanks for that. No, he didn't say anything much about nutrient levels at all. He did a test 18 months ago and ferratin was an issue, but when I look back at the resuls I wonder if they are optimal. Like I said, I need to go for new blood tests! I would be better to post them here than ask the doctor what he thinks!
You MUST be extremely careful with B vits as they can go sky high and give you other issues. I had this where I had been prescribed the injections and then the tablets, on top of which I had to take iron tablets and Two types of d Tablets (all prescribed) due to severe deficiency. The b vits went sky high and started adverse effects in my body such as face going very numb, bright yellow / glowing (excuse the tmi) urine plus other issues - you can overdose on them be very careful. Suggest you go back to your GP and just insist and say how bad you're feeling, tired lethargic and washed out and ask him to re-test full blood count.
I've had hypothyroid for longer than I care to remember (27 years) and my daily dose was at one point 300mcg (I was advised by my Gp the max you are supposed to take was 400mcg) thankfully it's got a bit better and gone down to 125mcg now .. However it might not just be your thyroid making you feel so rubbish - remember you can have more than one thing wrong (sadly) and like most of us on here, we do.
I really hope you get this resolved soon for your sake and find your energy levels replenished soon x
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Help - Good T4 and TSH levels but still feel awful
blood test results look normal but I still feel ill
Please help... I feel like giving up!
