I have been hypo for 11 years (previous Graves-RAI) and have managed to cope with the ups and downs but this site has been a real education for me. I have been told over the years my bloods are normal but I never knew that us hypos function better if we are at the higher end of the scale. I plucked up the courage at my routine thyroid test to be checked for B12 etc, which she reluctantly agreed to. I have to phone my GP to discuss so if someone would be kind enough to give me some advice I would really appreciate it.
Your B12, although in range, is still very low. It needs to be nearer the 700 mark to get the best our of your thyroid meds.
Your ferritin is also very low, but again in range, and should ideally be over 70.
Right I am going to start this again because you have so many low'ish results from zinc to FT4 that I would suggest you ask your GP for a referral to a gastro. To me it looks like you could have absorption issues - in other words something in the gut (whether it be wheat intolerance or general gut health) is stopping your from absorbing, not only you thyroid meds, but most of your vitamins and minerals.
How are you feeling and what meds are you on. Sorry I didn't pick this up sooner, I hope you haven't phoned your GP yet.
Thanks so much for your reply. I haven't phoned my doc yet as I am unsure of what to say to her to be honest.
I have been on 125mcg thyroxine for about 1 year. Previously I had been on 150mcg since the birth of my daughter in 2004. My meds were reduced as I was starting to feel anxious and agitated (like I felt when I had graves) so the doc said to lower dose and try and see how I felt. It did reduce the anxiety but lately have started to get some hypo symptoms. Since being on thyroxine I have never felt really good but I think I just got used to feeling like this and just got on with it best I could. I have times when I feel fine, other times, especially mid cycle, I feel drastic. Coming to this site has made me aware of the fact that its maybe not my dose of thyroxine that needs to be altered, but could be to do with B12 etc. I have had other bloods done before but never asked for a print out and always told they were within the normal range,.
When you say you think I should be referred to a gastro, what would they be checking for and how would I word that to my GP? Sorry if I sound a bit silly but I sometimes feel quite intimidated when I go to GP and forget what to say lol.
Thanks again for replying and look forward to your words of wisdom
If it was me I would ask my GP to look closely at the set of results you posted and ask her if she thinks you may have gut issues as, not only does your thyroid medication not seem to working properly but you have so many results that are low in range you are thinking that you may have a gut/absorption issues.
Do you eat a lot of bread - do you get many stomach complaints i.e. IBS, constipation, bloating, gas, have to run to the loo quick (sorry). I had a set of results like yours and my endo has sent me to a gastro as he thinks I have issues.
I might be totally wrong but you are obviously not feeling well, or you wouldn't have found us, and for your blood results to be showing so many things only just in range then something is not right.
If I can find some links for you to read regarding gut/thyroid issues would you like me to link them to you.
Thanks for that and yes I would be grateful if you would send me some links. A couple of other lovely people have replied and gave me links so I am going to read as much as I can over the weekend so I am as knowledgeable as possible before speaking to my GP next week.
Yes I eat a lot of bread, pasta and rice, and I did stop eating bread for lent a few years ago and I did feel I had more energy but I went right back to eating it again because I love it so much. As for IBS etc, I have, for as long as I can remember, suffered IBS like symptoms when I ovulate and during my period but don't suffer from those symptoms outwith those times so I have never associated that with my thyroid. I have over the last year started to suffer a bit from indigestion/gas on and off and did mention this to the GP but she never commented on that.
Yes you are right, I found this site when I was having a bad day but I never signed up for a while, just read bits here and there and then I would feel ok again and that would be that. But when I did sign up and started getting the email of the posts/questions everyday this is what prompted me to look at the bigger picture and not just my thyroid results. I had more or less came to terms with the fact that I have thyroid problems and I was never going to feel really good again.
Thanks again, would it be ok to contact you again once I have spoken to the GP?
Happy reading and yes you can contact me as many times as you need to.
I love bread too and used to buy all those lovely different types on stalls at farmers markets. I think there is an old saying that roughly translated means - if you like something a lot it is probably bad for you - and by your symptoms it looks like you could be gluten intolerant.
Hopefully your doctor will be telling you your ferritin is too low. The goal is 70 -90 and as you can see yours are way below. In fact they are all low in range they are major vitamins that play a role in conversion of t4 to t3 so should be optimal for a thyroid sufferer.
Thank you so much Yana for replying. When I got the print out of my results (I've never asked for a print out before) I kinda thought they were all a bit on the low side. Thanks for the links, I will have a good read at them later as I'm just heading out to work.
I agree with Moggie about malabsorption, all of those things look deficient to me.
In fact your results are almost identical to what mine were! I have Graves also. My B12 and folate were as low as yours, I asked the Endo to do the MMA test for me which is specific for B12 deficiency, it came back elevated (i.e. I was deficient despite being in normal serum B12 range). I was also positive for anti-parietal cells (but negative for anti-intrinsic factor). I now have regular B12 shots (every 2 weeks) and I was initially prescribed 5mg folic acid daily, I now just take a maintenance dose of 400mcg to 800mcg per day. My ferritin was 31 and I haven't met a doctor yet who doesn't think that's normal. I've been taking Spatone anyway to get it up slowly. Here is my link on all things B12 deficiency related, have a good read around it, and have a look at the page on testing, because the serum B12 test is not the best judge of deficiency:
I recently had my minerals tested and was low range on magnesium and copper, and deficient on zinc. I've been taking supplements under the guidance of a nutritional doctor, you need to know your copper level because taking zinc on it's own depletes copper.
I have never seen a Gastro, but I agree with Moggie that's the way to go (I'm thinking of asking for a referral myself). They can test you for things like Coeliac Disease, intestinal parasites, atrophic gastritis etc. I tested negative for Coeliac but follow a gluten free diet anyway which does seem to help. You don't mention vit D, but it's worth getting that checked as well.
You might think that your FT4 of 15 looks a bit low. I can tell you that mine hangs around 15 and 16 (I'm on 5mg carbimazole) and I feel very well, it was the nutritional deficiencies that were screwing me up.
Hampster x
Thanks Hamster, your reply is really helpful to me. I will be speaking to my GP next week and hopefully she will refer me. I will read up on all the links over the weekend and hopefully retain some of it so I can discuss reasons why I should be tested etc.
Well done for managing to follow a gluten free diet....I will find this very difficult!
Thanks again...and wish me luck
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Good luck! I never thought I'd be able to give up bread, but actually I feel so much better without gluten that I'm extremely happy to avoid it. I miss alcohol more!!! But I'm so intolerant to it, just can't risk it. H x
I'm like cutie and love bread so in some ways I am dreading my gastro appt next month. I did go gluten free for 4 months, found it very hard, very expensive and very effective but caved in and started eating bread again much to the disgust of a good friend who is very big on gut issues. She has a raft of knowledge and was helping me no end. She did say last night that no matter what the gastro said she would help me again (bless). She is a member of this site but doesn't come on a lot anymore due to better health and spending a lot of her time helping others with gut issues. I think I have managed to persuade her to do a blog though on her marvellous progress, which like you she has done all by herself.
I'd be interested in her blog if she starts one, it's such a minefield, we tend to think of one deficiency at a time without enough care about how all these nutrients work together. But it's such a lot for newbies to take in that you risk overwhelming them.
The trick with gluten free is to not try and substitute all the things you're giving up. I never buy gluten free bread and don't like the gluten free pasta. I concentrate on using potatoes and rice for the carb element of my meal. I eat a lot more salad than I used to which is a good thing, and I make sure I have plenty of meat and dairy. My one downfall is I don't like fish, so I supplement fish oil. The hardest meal is breakfast, so I do buy a GF muesli and GF cornflakes. But a lot of times I'll have just a couple of eggs, or natural yoghurt with nuts and berries.
Eating out is surprisingly easy because most restaurants have GF options, and I can still get a pizza fix if I need it (even Dominos now do a GF pizza, although I'm not convinced about the cross contamination aspect)!
And I don't skip on dessert - if its on the menu I'll have Pavlova, and I sometimes make GF crumble or GF pancakes just using rice flour. And I love chocolate and hot chocolate, definitely still on the menu (this is making me hungry)!
I try and avoid anything with soya as I don't believe it's any good for my thyroid, for me this is backed up by the fact that I don't seem to be able to eat Chinese food anymore without feeling awful.
Anyway, it's about finding what suits you, everyone's different. And there is an element of ending up on anti-depressents anyway because life has become so boring and joyless!
Good luck with the gastro, it's better to know than not I think. x
To make my woe's worse I am a veggie and have been for 25+ years and would NEVER dream of becoming a carcass cruncher again (sorry about the terminology) and, believe it or not, salads make my stomach really bad. My adviser (lol) seems to think that it may not just be gluten but a number of things. I tried to argue last night, when she reeled off all the foods that could be making me feel bad, that I had to eat something but she just laughed and told me I'd get used to it (dreading it really but know its got to be done).
Thanks for your input and I'll keep on at her until she does do a blog (or post as it is now know) and share her knowledge with people on here.
You'd probably be able to add some of those foods back in once your gut has had a chance to heal? I used to think I had an issue with dairy (I've been dairy free on 2 separate occasions before) but since I've gone GF I've realised dairy is absolutely no problem after all.
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Hi Moggie and Hampster
Well I spoke to my GP yesterday and as expected she told me my bloods were absolutely normal. She said my blood count was 13 so theres no way I'm aneamic and these levels are normal for a female because we have periods. I asked why they were low and she said they are not low they are within the normal range. I mentioned about that fact that the Thyroid Forum states that people with thyroid issues should aim for the optimal level of vitamins etc and she kinda raised her eyes so at that point I knew I had lost...so no I didn't get a gastro referral I am annoyed at myself that I didn't argue my case but I could feel myself tearing up so I just wanted to leave. She said if I started to feel worse I had to go back and see her....
Anyway, I have been reading all the links and stuff and I have already started cutting out gluten. I haven't been 100% this week but maybe 80%. I'm just getting used to checking the ingredients on the usual stuff that I buy and fortunately a lot of it is gluten free anyway. I have also changed the time I take my thyroxine. I usually take it in the morning before breakfast but I have something to eat quite soon after taking it so thats probably not helping. I very rarely eat after 8.30pm so I've started taking it at 11pm. I've not noticed any major changes yet but I am very positive.
Thank you both again for all your help
Liz x
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Well isn't her ignorance showing, shame on her. You don't have to have anaemia to suffer greatly from nutritional deficiencies. She said go back if you feel worse, well I'd get straight back there and ask for a Coeliac test before you start the gluten free diet, if you read the NICE guidelines on "when to test" you will see that you can tick off more than one of the criteria:
i.e. Just the fact that you have Autoimmune Thyroid Disease is enough of a reason to do the test, but actually you also have gastric symptoms as well so even more reason.
And if that comes back negative well then tell her you want to see a Gastro as you could have autoimmune atrophic gastritis, a condition commonly found in Graves Disease. See this article:
"Atrophic gastritis is the most common autoimmune disease to develop in patients with Graves' disease who have been treated with radioiodine."
You can test for atrophic gastritis (and thus pernicious anaemia) by testing anti-parietal cells and anti-intrinsic factor, and serum gastrin levels.
I know it's hard to stand your ground, but it's the only way sometimes, it's your health and your life at risk, not your ignorant doctor's. Maybe see someone else at the practice, concentrate on your symptoms and suggest that you want to rule out the above as you know they are common in Graves Disease.
H x
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You are absolutely right they are very ignorant at times. A perfect example of this was before I was diagnosed with Graves and when I went to GP with symptoms of rapid pulse, hair falling out, scalp burning hot as if on fire, severe anxiety/agitation, extreme fatigue but couldn't sit still, eating everything in sight but not puting weight on, feeling paranoid, pounding head when standing, to name but a few, and the GP (not the same one I saw this time) told me it sounded like I was depressed!!!! I said I'm not depressed I'm getting married in 6 months and I've never been happier but can you test my blood coz I don't feel right. She said she didn't think that would prove anything but she would do it but to come back to see her the following week and we could talk about puting me on an anti depressant. They phoned me that afternoon at work to say my thyroid was severely overactive and that I had to come down right away to start carbimazole. I hate to think that I would have just accepted her 'diagnosis' and went on anti depressants and ended up a right mess.
Thanks again...I will go away and do my homework and go to another GP once I feel confident enough.
Cheers, have a good weekend x
Hi cutiepie67
Would love to help if I can.
I was diagnosed as hypothyroid in in 2000 although I think I had some symptoms years before diagnosis. I have been taking thyroxine since then, in varying amounts from 25 to 200 mcg.
Of course the blood test ranges vary in Europe so what is considered normal here would be considered hypo in other countries.
What eventually made the most difference to me is natural dessicated thyroxine or armour (NDT). In the past I took some in addition to my thyroxine. Now that I am on NDT only I am feeling the best I have done for years and look better too.
I was worried that my daughter was showing persistent hypo signs. She was tested for all the usual things which all came back normal apart form Vit D. She wasn't was offered any solution for her exhaustion so I have taken her to see my private doctor who is now treating her hypothyroid symptoms with thyroid hormone replacement. Treating according to symptoms, with blood results used as a tool, and not the sole consideration, is the thing that has made the most difference to me and friends who have consulted the same doctor. Happy to send you my docs details.
Miss Lily x
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Thank you for your reply Miss Lily and sorry for taking so long to reply. I have read of great reports of people on NDT and am pleased for you that you look and feel so much better
I spoke to my GP who insists that my vitamin/mineral levels are not low and that everyone goes through stages where they are tired etc. so I am not getting disheartened and I am making changes to my diet and taking vitamins etc. so I will see how it goes for the next few months and take it from there.
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I am annoyed at myself that I didn't argue my case but I could feel myself tearing up so I just wanted to leave. She said if I started to feel worse I had to go back and see her....
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