I had a blood test a few weeks ago and my tsh was 5.94 on a range of 0.5-5.5. Doc prescribed me 50mcg Levothyroxine (without seeing me) and suggested I go back in 4-6 weeks time for antibodies. My b12 was also low at 258, range 211-911, but as it was above range, doc said she wouldn't so anything about it. Anyway, I started taking the levo on sep 12th each morning on an empty stomach. I decided to go back for a blood test last Wednesday (just under 2weeks on levo) as I wanted to get my vitamin D etc checked. I also asked nurse to check t3, she hadn't heard of it but wrote it down anyway. I've been feeling quite lightheaded /mild palpitations and short of breath the last few days and wonder if in over medicated. My results are as follows;-
Serum ferritin is 5 ug/L (range 10.0-291)
Serum folate is 11.7 (range is 2.8-19.0)
B12 is 209 (range is 211-911)
T4 is 17.5 (range 9.0-22.7, my previous result a few weeks ago was 14.9)
Tsh is now 2.52 (range is 0.35-5.5)
Serum free triiodothyronine is 3.8 (range is 3.5-6.5) - is this the t3 test and what does it mean?
Vitamin D is 54 (less than 25 indicates deficiency and think it means ok if under 75)
Can anyone help interpret and should I drop my dose? I've also bought vitamin d drops but not sure I should continue using as it's only been a few days, bought b12 tablets - should I ask for injections? And bought spatone which I thought was keeping me up all night but maybe should take that? Seeing doc later but I feel like I should know my stuff and tell her what I want. Thanks
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skinnychick
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I would say you're anaemic rather than overmedicated. Your iron is on the floor, no wonder you feel bad. I don't think Spatone is going to swing it, you need to see if the doc will prescribe something. And most definitely push for B12 injections, and ask to be tested for pernicious anaemia antibodies as well (anti-intrinsic factor, anti-parietal cells). My vit D was about that, I think it's in the "insufficient" rather than "deficient" bucket. Ask the doc what they think, maybe a vit D supplement is called for. Make sure you get your calcium checked first.
Thanks. I don't think the doc is going to be very happy with me when I ask her to test me for all is these things. Is calcium also by way of blood test? Still don't know if I've been tested for t3 and whether the antibodies is ok. I didn't know pernicious anaemia was separate to the iron test. I'll ask her to do that too, but what is the reason for that test specifically?
There are lots of different causes of anaemia, most people just think of iron. In iron anaemia the red blood cells are microcytic (small). In anaemia caused by B12 or folate deficiency the red blood cells are macrocytic (enlarged). If you have both types of anaemia, and the doc were to look at your blood under a microscope, they would see a dimorphic picture - both enlarged red blood cells and small red blood cells. However, they don't do this any more. They just run your blood through machines and look at your MCV result. In microcytosis the MCV is lowered, in macrocytosis the MCV is raised. If you have both, they cancel each other out and the MCV is normal. It looks to me from your ferritin (iron) and B12 results that you have both types.
The upshot is, B12 is a completely separate entity from iron. Pernicious anaemia is the autoimmune condition whereby B12 cannot be absorbed from our food in the gut. It is very common in hypothyroidism, studies suggest something like 40% coexistence. I think this % is very much higher in reality because the lab range for serum B12 is set very low. In hypothyroidism malabsorption of B12 and other nutrients can be due to low stomach acid, or Coeliac Disease, or classic Pernicious Anaemia, amongst many other reasons. PA and the antibody tests is explained further in this reference article:
Meant to say yes calcium is a blood test, and you may have already had it somewhere along the line. Low vit D and high calcium can be a sign of a parathyroid issue I think, which is why it's best to know your calcium values before supplementing vit D.
Thanks Marz, so what does that mean? I saw my doc and she wouldn't give b12 injections, said my level is not low enough. I'm wondering whether I can lower the levo to 25mcg or come off altogether, it's only been 3 weeks and it came down to Hal. In under 2 weeks. Any thoughts? GP has prescribed me cyanocobalamin for b12 to take twice a day and also ferrous fumarate 210mg to take 3 times a day, but should these be on an empty stomach or after/with food and any thoughts please?
You might want to have a look at the info and links on this website before you take those cyano tablets, which will really be about as useful as a tube of smarties (and not as tasty):
Wow thanks for that. My GP is away for a few days, maybe I should go back tomorrow and ask again (another GP) if I can have the injections? My GP said today there's no point in putting me on injections for life at this age (I'm 43) and to see how the tablets go and go back for a blood test in 2 months time! She said she understands and has been taking levo herself for 9 years. Or do you think the Holland and Barrett timed release b12 could be better than the cyan ones prescribed to me today? It's all so confusing, can't wait until I get my private health cover any day now
I can tell you what will happen. The tablets will raise your blood levels up a little bit, the doctor will tell you you're fine, and you'll be sent on your way with all the same symptoms you had before, and no diagnosis or treatment. It is a disgrace that they are giving out these tablets. They are only meant to be used in the very rare cases of proven dietary deficiency, and even then I question their role. Have a really good read around that website and look at all the links, you need to get educated and demand the right treatment. The idea that you're too young to be offered the correct treatment is insulting, imagine telling someone with diabetes that you won't give them insulin injections yet because of their age! Personally, I wouldn't take any OTC supplements, I'd push for injections and further testing (antibodies - parietal cells & intrinsic factor, possibly active B12, link below):
Thanks Hampster, you seem so clued up on all of this. Have you been through it all? Any ideas around how I can convince the second doc tomorrow, I did have a feeling that it might be easier if I skip seeing the one today and wait until tomorrow, ah well. So the antibodies test you refer to is not the thyroid antibodies? Because I had that last week and GP says that's fine. I just can't believe that if I have dropped my tsh level from 5.94 to 2.5 in 2 weeks, why I have to stay on levo for life according to my GP.
I'm not hypo (I'm hyper) so can't help you on that one. But did you get a copy of the thyroid antibodies result? I get a strange prickling sensation when people write "GP says that's fine". You need eyes on the result. And Marz is spot on, your T3 is terribly low. But your conversion should improve if you sort out all your deficiencies, vits and minerals are vital for proper endocrine function.
Re the B12, yes I've been there and honestly the more you know about it the better. It is a separate condition to thyroid, although I'm not so sure, they're so commonly together. But your GP wouldn't have tested for the PA antibodies, they usually only do anti-TPO which is thyroid. And just bear in mind you can test negative for the antibodies and still be B12 deficient, they're not foolproof tests.
Just print off some bits from the website and bring them along. B12 Facts, Testing & Treatment are good pages. Point out what it says about oral cyano on the treatment page, and say you don't think you've been given the right treatment.
Thanks H, I can't seem to find my results now! Would the antibodies test result be within the same blood test result? I must admit, I couldn't see any specific wording about the thyroid antibodies result. I'll try and find it and let you know. I've just made an appointment to go back to the doc this am at 11.10 and also for a blood test at 11.30. I'll be seeing another Doc. I'll ask for the B12 injections and I'm also going to ask about lowering the levo dose or coming off it for a while as I'm still getting mild palpitations and shortness of breath. Woke up in a bit of a sweat this am too. I'm skipping my tablet today for the first time in 3 weeks and might also ask nurse to check my tsh level too. So if you get this message in time, can you remind me what else I should be tested for by the nurse in the blood test - calcium and anything else? Thanks for your help, any other comments really appreciated
I'm not sure you should come off the thyroid meds, still think your symptoms are anaemia. Did you have a full blood count done? Serum iron levels? Why don't you get them to retest your thyroid then you'll know hyper or hypo. So:
Thanks. What is serum iron levels? When I asked the nurse to check for iron too at the last blood test, she said ferritin and folate covers it. Is that not the case? Should I ask the doc today?
Just looking at my blood test on 30 August, full blood count was 424.. Does that mean anything to you? Heamoglobin concentration was 126 (110-153).
Re the antibodies result, looking at the last result, it says the thyroid peroxidase antibody level is <33 iu/ml (0.0-60.0) - what does that mean?!
Well my TPOAb was over 500 so that should give you some idea, it's usually quite high in autoimmune thyroid disease. If you look at the labtestsonline link above about iron you'll see the different tests and what they mean. Serum iron is the actual level in your blood, ferritin is a protein that stores iron, your iron stores. Folate is nothing to do with iron, it's a B vitamin, B9 I think. B12, folate and iron are all required in the healthy formation of red blood cells.
Thanks. Well, I went for my appointment today and you're right, she fobbed me off re the b12. She was another locum doc and I think I may have been able to convince her, but then she started reading the notes and said my GP has a plan for me and for me to try the tablets and then go back in 2 months. She said I might not be able to stand the b12 injections as they are quite big and that iron is also available in an injection and I think she was wondering why I wasn't asking for an iron injection. She also said that I couldn't choose as they also have to defend their decisions and everybody would be asking for an injection then. We discussed levo and that I've been getting palpitations etc and she said she would not have prescribed me and that it would be ok for me to come off them, so I'm off them after being on for 3 weeks! Not so many palpitations either today! Anyway, I got the nurse to do an ECG and also yet my thyroid again! I've got private cover now so will go for a full health check soon.
You are on a fast learning curve! I know what you mean about the T4 - I hated it, really.
No palps -but brain fuzz, low energy & stomach upset for days etc. after struggling for 2 months on it I was glad to pull the plug as I felt worse.
This is common enough on a too low dose, but after learning about how Levo is made, I felt I could manage a little longer without it in my particular life ! Don't ask , lol.[Bacterial DNA, for one thing]
Many are OK with it -but not sure where the numbers are....
Be wary on the stopping T4 and adding iron. You may find your digestion bungs up a bit so keep fluid levels up.
If treated- avoid Fybogel and try Laxido, as no aspartame in that.
The gut is heavily involved in matters thyroid in multiple ways.
You may find you tolerate T4 better when your other[esp.B12 low!!] deficiences are are sorted out but ,if sensitive to it, worth looking for other approaches long term. [T3, NDT ] as you are clearly hypo.
Thanks Tegz. Do you mean fybogel and laxido if I have digestion problems? And what do you mean about being careful re taking iron, I would have thought it ok now that I've stopped the levo. I am intrigued, what is the stuff made of?! I had a really good sleep last night ( no insomnia or palpitations). Has anyone tried the - I think they're called mega thyroid tablets from iherb? I'm thinking of trying them. Either that or maybe kelp?
Yeah- I mean constipation due to no T4 [it could have been helping this] and Iron in large amounts, renowned for it. I kew you be interested and as a lot of people take Levo don't want to shout my worries.try a little search or p.m me. My interest backed off since ceasing it.
I've tried thyroid herbs with L Tyrosine and they went straight to my brain- just as how T4 goes wrong??
If you get blood tests it may be worth it but hormones are not to be trifled with, tbh.
Same with Iodine [Kelp]- if you know serum level and need it then maybe, but better not an any T meds.as they work their own iodine, I think.and it could screw up the system.
I really am quite disgusted at the misinformation you have had pushed on you in this appointment.
You might not be able to stand the B12 injections as they are quite big... what the hell? What sort of a way is that to talk to a patient about a life saving treatment. Just to debunk that myth, I have had many B12 injections and they are just the same size as any other injection. Some people find them painful, they might sting for a second whilst being administered. This is often down to the skill of the person giving the injection. I don't have any problems with it. If you're very skinny and you don't have much arm muscle, then ask for it in the thigh or the bottom, it doesn't have to be the arm.
And of course everyone would be asking for an injection if they offered a choice, the bloody tablets don't work! And if their decision is about cost, I can tell you that a vial of B12 costs between 60p - 70p, and if they taught people how to do their own injections then the nurses time would be freed up so no cost there.
This person has a dangerous lack of knowledge about the damage and consequences of B12 deficiency, please try not to see them again.
And as for your GP's plan, all I can say is please go back to them, with info from the weblink I gave, and ask them why they are giving tablets which are only meant to be used for dietary deficiency (I assume here you're not vegan)? Key support groups on B12d here:
I don't know anything about iron injections so can't comment on that. Some people find iron supplements hard on the stomach. If this happens to you post a new question about this because there's lots of people on the forum with experience and advice about iron.
I'll leave it for others to comment about the levo situation.
I just wanted to say re: Spatone that you can take two sachets at a time until you recover. I had a very hard time with tablets - nausea! - and Spatone was a lifesaver for me.
Hi, what were your iron levels? I thought spatone, even 2 sachets might be too weak for my level. And how soon after taking the tablets did you start getting the symptoms?
Sorry I haven't replied - I just saw this. I'm afraid I don't have my results to hand - this was a few years ago - but I don't think it took very long to get back to normal. It was nothing like as hard as getting my vitamin d back to normal. I think someone here is taking three Spatone - ?
Have you tried the tablets? I couldn't manage them but maybe you'll be fine. Supplements are hard on my stomach but some people don't have a problem.
And have you found the link about loading doses of vitamin d? You sometimes need to take large doses for a few months before you can get the levels to normal.
Hi, I finished a whole month of ferritin tablets, 3 times a day! And so I went for another blood test today to get everything checked again. I think my vitamin D is within range but I've been taking some drops from holland n Barrett. I'm also still taking 2x B12 tablets daily, plus an omega369 tablet, aloe Vera juice and just started taking herbal thyroid tablets from today! Still feel tired at times, but will post my blood test results when I get them x
Your d may be within range but it could be better being a bit higher (closer to 100 according to my doctor, though others would differ). I was told to take 5000IU per day, but that could be because I have so much trouble keeping my levels from plunging.
Sounds good that you're being retested too, and so soon. My gp never wants to retest for vitamins.
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