Latest bloods; they say 'awaiting other results' and am confused to see iron/ferritin and Vit D missing. I know they're waiting for cortisol and lupus.
Test was done on Wednesday a.m. at 8.55am exactly as per protocol recommended here.
I am on 75mcg Levo, (Mercury 50/Wockhardt 25) currently. I am still symptomatic. After 3 weeks (yes I know you'll say wait 6!) I have gone through the 'arc' of a slight 'up' after 10 days to declining again. These bloods were done by GP's choice due to my problem with fasciculations & her concern that after 2 months this isn't a normal reaction to Levo.
My main problem aside from the usual fatigue, full head, dizziness, pain, insomnia, weight problems, no energy - is major fasciculations which are problematic at night. These get worse late in the day when I'm tired and can be seriously anxiety-making at night. They were much worse on Accord, seem to be less on Mercury.
Since this blood draw on Weds I have taken a few mcg of Levo extra as GP had said I could go up in dose if bloods suggested it (said we should discuss but OK to do it if I felt it would help; she suggested upping to 100 but I tend to creep up very slowly). Have taken a third of a 25mcg tablet, and just for these 2 days have felt better, slept, had less fasciculation and more energy.
WORRY - The B12 count is high. I am taking Thorne Basic B; I last took one on the Saturday before the tests as it does seem to help with the fasciculations. Reading up on the recommendations, although I didn't stop a week prior to the test, stopping then should have been enough to not skew the test. After the bloods, when I took one again, the fasciculations began to settle slightly again (the 3 days without it were horrible). On looking at these results (appointment to discuss with GP not until 30th), I wonder if I should now not take one again. It makes me wonder if I am somehow not utilising B12. The test does not say if this is active B12 or not. Please don't say anything that will make me fear kidney or liver failure or something worse, I'm struggling anyway and often frightened about my symptoms! (both liver & kidney function were fine tested in May). Should I be worrying about this B12? (This is up from 706 (211-911) in May, I was supplementing already then and had taken it on the day of the test as didn't know protocol. I did wonder if I really needed to take a heavyweight B supplement as my levels were already good, but GP's advice was not to worry about vit supplementation short term. I accept that it may be another B in the complex which is helping the fasciculation, although how do I know which?!
I will want to argue for a slight increase in Levo; any thoughts or advice on that please, going to say 87.5mcg? & How to argue to square this with GP, given 'normal' result (saying have already upped an extra 8mcg?)? Although TSH has come down, T4 is only half way through range?
Relevant results: (Iron/ferritin and Vit D not here, hopefully that means 'YET')
Serum Vitamin B12: 1363ng/L (211.0 - 911.0) (comment that it is raised).
Serum Folate: 22.19 (>5.38)
(Potassium 3.5 (3.5 - 5.3)
TSH 1.69 (0.35 - 5.50)
FT4 15.1 (10.5 - 21.0) (Lab doesn't do T3. Comment that thyroid levels are 'normal' and dose should stay same).
Any input/advice very much appreciated please with my sincere gratitude.
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turquoisea7
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Fasciculations are a hypo symptom. They are not caused by taking levo. In fact, when on the right dose of levo, they should stop. And I very much doubt that you are on the right dose yet. Your TSH is highish for someone on thyroid hormone replacement, and your FT4 only mid-range - which means that your FT3 (the active hormone) will probably be lower than midrange, which would be to low for most hypos. It's low T3 that causes symptoms.
But, have you tried taking magnesium? That often helps.
As for the B12, there's really not a lot of point in testing when taking it, because it's bound to be high. But, B12 is water-soluble, so excess will be excreted. Yours is not that high, anyway. Not for someone taking B12.
Having said that, your B complex contains biotin, which can affect lab testing. We normally advise stopping the complex about a week before the blood draw. Did you do that?
I don't know how you can ask your doctor for an increase. It all depends on the individual doctor, how knowledgeable they are about thyroid, how receptive to patient well-being, or how hide-bound they are and/or terrified of over-dosing. Some are so terrified of over-dosing that they deliberatley keep the patient under-medicated. Which all comes down to ignorance, of course. Just ask and see what happens. Say something like 'my symptoms have improved enormously, my quality of life much improved, BUT I feel things could be better with an increase in dose'. See if that appeals to her better nature. lol
Or, you could do private labs to get an FT3 results to see how well you're converting T4 to T3. Although it's often difficult to get doctors to accept private lab results, it might have some effect if your FT3 is very low. If she even knows what T3 is, of course. A lot of them don't! I'm afraid you're just going to have to play it by ear.
Thank you so very much for this, you have been a huge comfort. For me the fasciculations started after beginning initial 25mcg dose (yes much too low, terrified GP), so clearly that made me more hypo than I was. They have just never stopped.
Yes I take magnesium, use GHN lotion, bath in epsom salts/magnesium flakes, everything. I use Solgar Magnesium Citrate 400mg, or Floradix Liquid Magnesium. Yes I take them apart from Levo and am using all the supplements recommended here, VitD/K, chelated Iron, etc. I have carefully read and taken on board (I think!) all the good advice on what to take and how. However nothing really helps except the dose of Levo and having changed to Mercury by accident. Pharmacist has given me 4 different brands so far, a different one every visit.
The B Complex I last took 4 days before the bloods, not a week, without it I felt the fasciculations were worse and I was desperate. I read and read everything I could here and elsewhere and it seemed that 48 hours' withdrawal was enough for the biotin at that level of dosage not to falsely influence the test; 4 days was the best I could do, I was feeling horrendous & took one out of desperation. The thyroid results feel about right given the previous 2 bloods, so I believe it's just the high B12 showing up that seems to have come from the supplementation.
You're very welcome. I'm just sorry I don't have anything more positive to add.
If you feel well on the dose of levo you're on, that's good. But, your TSH would be too high, and your FT4 too low for many people. We're all different.
I don't feel well at all, I feel horrendous most of the time, and have a very short operating period each day, about 2 hours. Although far less deathly than on 25 (immobile, suicidal) and 50 (sitting up, very ill). I want to get everything to optimum and can completely feel in my body how all the advice here, to get TSH tiny and T4 to the top, would be where I'd feel human again. I can't live with the fasciculation, that more than anything else pushes me over the edge, after months of it 24/7 I've just had enough of being brave and coping and am desperate to get levo dose up and effective.
Ah, sorry, I must have misunderstood. When you said you thought the thyroid bloods were 'about right', I thought you meant they were good for you. So, you do need an increase in dose, then - possibly several increases.
Ah I see, no, I meant I thought the levels sounded right given comparison to the last two and that I didn't think the biotin withdrawal only 4 days before rather than 7 had skewed them. No, I feel dreadful, and it makes me weep that the blood sheet comment is 'normal, no increase'. I feel so badly for all the people who haven't found this forum and would just live with that. I really can't. This is not a life, unless you enjoy living on a sofa. Hopefully this GP will agree to 100 at least, heartbreakingly she leaves the practice after my next appt and I'll be at the mercy of the idiot who thought I should be perfectly fine on 25mcg indefinitely.
The biotin depends on how they do the testing, something we don't always know. And, also, it's rather haphazard, it can affect some results, and not others. And we don't know if it will give a higher result or a lower. So, we usually say leave it off for a week, just to cover all angles and be on the safe-side.
Yes, I know what you mean about people who just trust what their doctors tell them. I have a cousin like that. She said I should just do what the doctors tell me and not argue. I said that if I did that, I would have died a long time ago! And she didn't speak to me for months!
But, you have to realise, when a doctor says 'normal', it doesn't mean normal in the way your or I would mean. It just means 'in-range'. (Funny thing - not! - I had that exact same problem with the vet this morning, and I'm still fuming about that! lol) No, it just means 'in-range'. And, a huge problem is, they do not fully understand how to interpret blood test results (neither do vets, apparently). They honestly believe that if a result is anywhere within the range, everything just has to be fine - and mid-range is always perfect! Sigh. And that is really the huge obstacle we have to over-come.
And the trouble with good doctors and dentists, lawyers, et al, is that they tend to move on, go on to higher things. Which is great for them, but kind of leaves us stuck behind.
I hear you completely, I'm not someone who just implicitly trusts someone just because they have a title. Every body is highly individual. I had a lovely old-fashioned vet who worked on real life rather than numbers and who let me read and interpret my own animals, very lucky there. More than anything living with animals has taught me about observation of symptoms and the value of that in diagnosis. With GP's I expect that what I feel and think is given credence over numbers on paper, I'm astonished that they would believe anything other than what I'm saying about my own body. I find it really odd that they can sit feet away from you and think it's OK to suggest you don't know what you're experiencing. if you did that in any other setting you'd be calling someone a liar and it would be unacceptable! It seems a weird contradiction in methodology, given that if you get referred to rheumatologists, for example, so much diagnosis is authoritatively made on subjective comment rather than any testing. Given that this is my body and my health, I literally can't believe that they have the authority to keep us sick and can just say, no more help.
May I ask you please, I saw on one of your other posts that you say your whole process and your health has been much better since managing to get rid of GP's and self-medicate. Are you only taking self-sourced T3?
I see that there are many private testing services to use. Do people also manage to source their own T4/Levo privately? (I'm not asking where or how (yet) just if you know if it is possible. I am very anxious that this 'no change in prescription' note on my bloods is going to cause me a problem with getting any further than 75mcg, and I have 10 days to wait until I can confront that issue. Also I have the problem now of only wanting to use Mercury and the worry of how much of a nightmare that is going to be. The prospect of spending my life coping with this condition is not a happy one, but the additional strain of living with the constant worry of how to try and get what I need from the GP and pharmacist is something I already feel I want to find a way around, and may be forced to do out of necessity depending on next GP consult.
Yes, I source my own T3 - I don't take levo, but I know it is possible to buy that on-line without a prescription.
I understand your worry perfectly. It can be extremely difficult to get what you need, and as much as you need, out of doctors who have no understanding of this disease and how to treat it. However, I'm not sure you'd be able to buy Mercury on-line. But, cross that brideg when you come to it. Just be assured that, as things stand, you can buy T4, T3 and NDT on-line, without a prescription or any input from your GP, and you can do your own private labs. It is possible.
Thank you. So far as I can see on a bit of googling it seems to be only Teva that's available to buy online. Accord doesn't work for me either so I'm beginning to feel my options are getting very squeezed. If I can't get rid of these fasciculations soon, after 3 months of 24/7, my resilience is running out just to keep coping with it, let alone trying to find the fight to battle for what I need in order to help. Will just live with the anxiety until seen the kind GP next and see where she leaves me.
Hallo, thank you for this. Just spent the last couple of hours googling sources of Eltroxin, the GSK one seems to have the same formulation as Mercury so am going to get some to try; not sure which Eltroxins do have the same formulation so will have to check them. Sad how all this just eats your life up. If I can find the right one, for the price of a pot it's worth trying. Found one place where you just have to fill out a series of questions, if it's the right formulation will see what happens with that. Frankly the prospect of being able to take back control of my own dosage, testing & wellbeing is something I need to feel I can do in order to argue confidently with the GP - i.e. I will take the dose I need to feel well and would prefer to do it with your support rather than alone - instead of the constant, will-they, won't-they, what-if, hoping and justifying and fear of being refused help. It's all just added stress to an already very unpleasant condition. Will no doubt let you know what transpires.
Magnesium, yes I was taking citrate 400mg but switched to Floradix Liquid Mag which is a smaller dose but feels better for me, some days I alternate. Also flakes in the bath and GHN lotion. None honestly seem to help but I am trying anything. Yes Iron also, was doing a chelated 14.5mg but when periods stopped recently thought possibly too much, so have switched to Better You spray, at same time as juice late at night, well away from Levo dose. Did ask for Iron/ferritin panel on these bloods but there was nothing, suspect may have been ignored if they don't come back with the other remaining results. Will buy private test if they have ignored it as a) want to see improvement of that number and b) don't want to get into toxicity. Just need to know I'm on the right track with that and see if numbers actually are improving.
Well, that all sounds good. But, it might take a long time for something to work. One just can't tell how long anything is going to take.
For example: I started taking zinc, and almost over-night, I went from 4+ Ibuprofen a day for muscle pain, to Ibuprofen and pain free. It was breath-taking.
On the other hand, it's taken 9 years of almost daily magnesium to sort my bowels out after hospital force-fed me PPIs, which wrecked my bowels and gave me raging constipation - if constipation can rage... lol But, you see what I mean. Patience is the key.
Thank you so much for this, I sincerely appreciate it, particularly the 47.62 number which makes me breathe a sigh of relief, mainly because it makes much more sense in terms of how I feel rather than a remark on a blood sheet saying 'normal, no increase'. Now I just have to hope this GP will help me, she's been so kind but is leaving after my next appointment, so I'll be at the mercy of the other one who is petrified of all things thyroid.
I will happily chug up to 100mcg and ask for Mercury to be specified as having been given it by pharmacist (4 different brands so far) it has slightly helped with the fasciculation. Accord doesn't work for me at all. I have managed to avoid Teva after one dose and feeling nauseous for 24 hours afterwards. I feel that if I could get off the Wockhardt and on to Mercury alone for 100 that may help, too.
I am taking all the supplements recommended here; chelated Iron, Mag Citrate, Vit D/K2, B complex, all at the recommended doses and as advised in terms of timing re levo and each other. As I say to greygoose above, I am using literally every form of magnesium I can lay my hands on. Nothing helps the fasciculation except for a few hours after taking the dose of levo when I first go up a dose. As my body adjusts to that dose (or this has been the case with 50 and 75), the fasciculations kick in again more quickly to the point where the dose makes no difference at all, then I get desperate for an increase. According to the guidelines for my weight I should be looking at around 125mcg, so am praying GP will help me get there and if I have to fight/source privately after that to get it up to where I feel well - given the likelihood that with hashi's I may well need more - then so be it. The prospect of being stuck at 75mcg given the comment 'normal no increase' is not something I can live with.
Vit D : I don't have any Vit D results, have repeatedly asked for testing and it was meant to be done this time. Am still waiting for half the bloods to come back, it may well not have been done again. I have been supplementing 4000iu per day since rheumatologists's advice 5 years ago so expect it to be good (or over the top). May have to buy private test to check this. Current Vit D supplement is combined with K2.
Iron/Ferritin: Again had asked for this to be included this time purely because I am supplementing based on last result. As yet no result included, so they may not have done it again because of course, it's really not important to them.
I have been supplementing Iron daily since test done 5 years ago showed ferritin at 4 (10.1-291) when I was already supplementing. Rheumatologist's advice then was to take over the counter supplement, so I bought a higher dose/better supplement. I was pretty poorly then. No comment from GP on that level, no follow-up. Have seen on the forum since joining that NICE guidelines state anything under 30 is deficient. Good job I did supplement or I'd probably have keeled over completely.
Last test in May showed ferritin at 33.1 (10.1-291), was tested for coeliac but was already largely GF (yes, did tell them) but 3 separate GP's when I have raised issue of ferritin, they have each said 33.1 is 'not low really'. I can SEE it's low!! Had dreadful heavy & prolonged periods for last 5 years (until packed up recently), no doubt thyroid related, also vegetarian/vegan,so expect that has all compounded issue. So I am supplementing now with Better You spray daily feel I have to, until I can see good levels (again as am being ignored, probably have to buy private test to check these levels).
Folate and B12 results were above, but cut & pasted here, greygoose has reassured me about the B12 as the blood sheet comment is that it's high, I believe purely due to supplementation:
Serum Vitamin B12: 1363ng/L (211.0 - 911.0) (comment that it is raised).
Serum Folate: 22.19 (>5.38)
Just repeating this from first post to include background: B12 is up from 706 (211-911) in May, I was supplementing already then and had taken it on the day of the test as didn't know protocol. I did wonder if I really needed to take a heavyweight B supplement as my levels were already good, but GP's advice was not to worry about vit supplementation short term.
I have been vegetarian/vegan most of my life, also for most of adult life have not been able to eat much (TSH was at 4 about 20 years ago and has only gone up, so have probably been borderline hypo and then been hypo for a long time). So I tend to be as on the ball as I can about supplementing whilst being careful. Have clearly overdone the B complex, but it really does seem to help.
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