Hi all just had my results from GP receptionists says the results were normal which indicates correct level of T4 replacement. I have not felt well since two weeks after dose increase to 50mg, I have absolutely no chance of getting a dose increase with my latest result! TSH was 3.71 no other tests were done.
I am waiting for thyroid ultra vitamin test results from medichecks. I’m desperate feel like giving up 😭
Updated this post just got medicheck results and I’m totally confused by the medicheck doctors response!
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I think you need a new doctor. Your TSH is still much too high, and you are still hypo. So, not surprising you don't feel well. No way does that result indicate that you are on the right level of levo. I think you need to see your doctor face to face and have it out with him. He shouldn't be dosing by the TSH, anyway. He should be testing at least the FT4.
The aim of thyroid hormone replacement (levo) is to reduce the TSH to one or under, and raise the FT4 and FT3 to the upper part of the range - but if he doesn't even test them, how can he know where they are?
50 mcg is a starter dose, and the protocol is to retest six weeks after starting levo, and increase the dose by 25 mcg. Then retest in another six weeks, and continue that way, testing and increasing, until all your symptoms have gone. Your doctor obviously missed that class in med school!
I really don't think receptionists should be telling patients that they are on the right dose of whatever, because they are not medically trained. And, your treatment should be between you and your doctor. I wouldn't trust a receptionist as far as I could throw her, who knows if that message actually came from the doctor himself. I would want to see him and ask for an explanation. Take someone with you, as a witness, that often gets you more respect. And learn about your disease before you go, so that you know what you're talking about. You are less likely to be fobbed off. A TSH of over three is not normal, not for anyone. You are hypo when your TSH hits 3. For a person with no thyroid problems, the TSH is between 0.85 and 1.25. But, hypos often need their TSH lower than a euthyroid person, because they do not function in the same way. I'm afraid you need to become and expert in your own disease, because knowledge is power!
Thanks GreyGoose, see comments below in response to SeaSideSusie. Medichecks doctor agrees with you! I can’t get an appointment for two weeks so have no chance of getting increase before then and I started feeling ill again 6 weeks ago after a couple of good weeks when I had an increase to 50mg from 25 mg. I’m going to increase my dose and start taking 75 mg I will take 100 mg alternate days I’m not coping as I am I feel totally despondent!
Well, it's not rocket science, is it. Anybody who knows anything about thyroid knows that that TSH is too high.
Increasing your levo by 25 mcg makes 75 mcg, not 100. That is too much in one go, even on alternate days. And increasing by too much will make you feel worse, not better. Just go up to 75 for six weeks, and then you can go up to 100 every day if you need to.
Your doctor really is bad at thyroid. He shouldn't have started you on 25 mcg, that is too low. 50 mcg is the normal starting dose, unless you are very young, or very old and frail.
What were the Medichecks doctor's comments? They do toe the same line as the nhs and generally aren't worth having. You get your results quicker if you say No to comments, then they can be interpreted properly by members here.
Hi SSS, I was hoping you’d respond thank you the medichecks doctrs comments are below.
Here I am reporting a Thyroid Check Ultravit.
From your medical history, I can see that you take levothyroxine for hypothyroidism.
Your thyroid stimulating hormone is in the upper half of the normal range and you have normal thyroxine and free T3 which suggests that your levothyroxine dose is too low.
People with hypothyroidism can feel better when their thyroid stimulating hormone is maintained in the lower half of the normal range
You should discuss this further with your doctor as you are likely to need an increase in your dose.
Your antibodies are raised indicating an autoimmune basis for your thyroid dysfunction.
You have high levels of vitamin B12, if you are taking a B12 supplement then I recommend decreasing your dose. If you are not taking a supplement then I recommend checking your full blood count and liver function to assess whether this is significant.
Your levels of folate and vitamin D are normal.
Your CRP level is normal, suggesting low levels of inflammation within the body.
You have high iron stores. This is likely to be due to a high dietary intake of iron, or taking iron supplements. If you are taking supplements I recommend decreasing your intake. To exclude iron overload I recommend an iron deficiency check.
Nice surprise there then, I was expecting the comments to say they were "normal" (because in range) but good to see that that particular doctor advocates a lower TSH.
Which bit(s) confuse you?
I think you Folate is too low, it should be at least half way through range.
I can't see your Vit D result very well , I'm on my tablet and it's too feint to make out properly but guessing 68. 4 and it's too low. It should be 100-150nmol according to the Vit D Council.
Hello again yes VitD is 68.4 so do I need to continue taking it? How do I increase folate, what should I take? I have been taking VitD better you and B12 for the last 4 weeks so it was probably low before. Should I stop the B12?
I’m also worried about the iron levels and why they’re so high I’m not taking iron supplements. I am taking selenium and magnesium though. I’m confused because he says my T4 &T3 are normal but I’m under medicated? My last test was 3.71 and I was on 25 mg and doctor refused increase I went to see a different GP and persuaded her to increase to 50mg and here we are 8 weeks later and my results are still 3.71 exactly the same? Surely that shows something amiss?
No I didn’t know I had hashimotos do I need to go gluten free my antibodies seem really high. I’m practically gluten free already live on very low carb diet which cuts out a lot of gluten. I was having unexplained high blood sugar levels. Thanks for your help I’m absolutely lost can’t think straight.
You should continue with your D3 (and cofactors) and when you reach 100-150nmol you need to find your maintenance dose which may be 2000iu daily, maybe more or less, maybe more in winter than summer, so we need to retest twice a year to keep within the recommended range.
Folate rich foods such as leafy greens may help raise your Folate level, but a good B Complex containing 400mcg methylfolate will eg Thorne Basic B or Igennus Super B. For future tests you would need to leave off the B Complex for 3-5 days as the biotin it contains may interfere with results.
You could stop your B12, there is some in the B Complex, there is more in the Igennus at the recommended serving (2 tablets) than Thorne.
Your Ferritin may be raised due to high dietary intake, or maybe due to inflammation or infection at the time of testing. CRP is an inflammation marker and although yours is within range, it's half way through.
The comments say your are undermedicated because of your TSH level. Your FT4 and FT3 are in range but your FT4 is too low, I can't make out the FT3 result. The aim of a treated hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their reference ranges if that is where you feel well.
With regards to your TSH being the same, we're both tests done under the same circumstances ie
° Early morning blood draw, no later than 9am
° Overnight fast from evening meal, delaying breakfast until after blood draw
° Levo left off for 24 hours
Hashi's means that you should adopt a strict gluten free diet
Hello again my free T3 is 5.31. Yes both tests were done at 8:30 fasting no Levo for 24 hours. I’d picked that up off this site so made sure conditions were the same. Which one is the T4 is it the one that says 15? Sorry I sound dumb but I get the T4s and Free T4s mixed up and I’m trying to understand them.
I’ve been looking at strictly gluten free diet and will start straight away, I’m determined to get my life back! I am so grateful to you for your help. I’m sure you’re tired of repeating yourself to people like me, my only excuse is I literally can’t think straight and to think I was previously a teacher is mind blowing! I have trouble remembering why I got off the couch! I thought I had dementia which runs in my family 😟
I’d increase your vitamin D3 for a while. It’s fat soluble so take that into consideration.
I wouldn’t worry too much about your B12 being high, mine has been high at times and I very much doubt that’s what is making you feel awful.
My own ferritin is always high. The Blue Horizon doctor says it is likely to a sign of inflammation which I would agree with.
My CRP reduced when I went totally GF. I joined CoeliacUK when I started - to get their handbook which is very helpful, plus you get on,one access and a magazine so it’s well worth joining them.
My antibodies plummeted when I went GF - I started as an experiment and my antibodies fell right away so I’ve never gone back to eating gluten. Just remember junk food is still junk food even if it’s GF junk food.
I’d be tempted to do what GG says and increase my T4 - you don’t want to become hyper so I’d do it carefully.
I never had to buy T4 but I’m sure others will be able to advise you on how to get more or you could always lie and say you lost your supply of T4 somehow.
Thanks Fruitandnutcase, I’m glad you mentioned your ferritin levels being high, I have to admit when I started reading about why it might be high I almost had a panic attack! I will defo take a look at Coeliac UK. I’m not sure I need to do much to be gluten free I’m practically on an Atkins diet now, which worries me because I eat so much protein I think I might have caused the high ferritin. I am defo going to increase my Levo to 75mg, I’ve got an appointment in two weeks time I will fight it out then! I think I will be able to manage the gluten free diet once I understand what I can eat, fingers crossed my antibodies will drop.
I do low carb, high fat - I became T2 diabetic as a side effect of treatment for my arthritis and I ate my way into remission by going LCHF, well it’s more lowish carb, I get my carbs from non grain sources and I don’t eat masses if fat because I don’t love fat but I’m not scared to eat fat.
I probably eat quite a lot of protein but my ferritin was high before I started the LCHF so I’ve never thought it was that.
Like you I nearly had a fit about my ferritin then I thought about what the report said about it and realised that I’ve got so many autoimmune conditions that my body is probably a seething mass of inflammation and I calmed down.
I gather if you give blood that lowers your ferritin. So you could always try that.
That’s actually a really good idea! I will look at doing that can you give blood if you have Hashimotos? Ive registered on coeliac UK and download the supermarket apps . Thanks a million for that tip it’s hard to be practical when your heads cabbaged. Kindest regards 😜
I queried donating back before Easter when they were desperate for donors because I take hydroxychloroquine and they got back to me to say it would be fine if I’d been on it for a long time and I was stable. So I’m going to be altruistic and donate while I’ve still got a couple of years left.
Cabbage head, that’s good! 😉 just about sums it all up doesn’t it. I thought I was actually mentally ill or I was developing Alzheimer’s or some sort of dementia. It’s quite worrying when you can’t get your head together and you can feel your old self disappearing.
Coeliac UK is amazing. Wait until the ‘bible’ arrives! Every ingredient and food known to man is in there I think. Once you get 8nt the sw8ng of it, it’s quite easy to cook. I used to cater for some people who were coeliac so I knew what to do. I just used to make the entire meal GF then they could eat everything.
I’m not keen on the bread - it always tastes sort of sweet - but I don’t eat much anyway because grain based foods really spike my blood sugar so it’s no great loss. Schar bread is the best I’ve used but I’ve got a little loaf of some sort from Tesco in the freezer in case I ever fancy a slice of toast - it all tastes better toasted.
Omg, I thought the exact same thing, I was slurring my speech and I’d start to say something and a load of gobbledygook would spill out! I was lisping, stammering and saying the most bizarre things. As soon as I started Levo it got better really quickly but I’ve started getting forgetful again these last couple of weeks.
I made some bread for my hubby, he loves it but it doesn’t stay fresh for long and you’re right it is sweet. I’m going to try experimenting with less sugar in the recipe and adding seeds and things see how it goes. One of the first things I saw on Coeliac UK was a recipe for bread that stays fresher longer, so will try that.
I’ve had a lot of problems with my blood sugars going really high and staying elevated for long periods, but my HBA1c keeps coming back borderline but that’s why I went low carb.
I will look into ringing the blood bank tomorrow. Thanks again!
Fruitandnutcase I’ve been scanning the foods in my cupboard and it says milk and skyr yogurt are a no no is that right or is that just cealiacs that need to avoid milk and dairy products sorry to be a numpty but looked in line and from what I can gather I need to not only cut gluten but eat to the cealiac diet totally? Is that right?
I don’t drink milk at all because I just don’t like it and I never eat yoghurt because I don’t like the texture of it - nothing to do with being gluten free. If you were on a non dairy diet you would want to avoid cow’s milk and products containing cow’s milk.
Coeliac is just avoiding various sorts of grain. You’ve got to read labels because gluten can pop up in all sorts of strange and unexpected places - I once bought a tub of mixed nuts from M&S and I have to confess I didn’t read the label before I bought them, turned out they had wheat in them - who would put wheat in a tub of mixed nuts - well apart fr9m M&S that is.
I can’t find milk or Skyr in my CoeliacUK handbook but if you google skyr it says no.
If you read this it explains what a gluten free diet is - gluten is found in grains
Fruitandnutcase thanks for getting back to me. It was the application I downloaded from CoeliacUK that was saying no to milk and dairy products which totally confused me. I have skyr every morning for breakfast with nuts and grapefruit so if that wasn’t allowed I would struggle to find an alternative. It made me wonder if Coeliacs could eat dairy and drink milk because the app is saying no to all of them! I thought I’d found a really easy way to shop just scan the bar code and if it says no then don’t buy easy peesey! No of course it isn’t! Lol 😂
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