Hi, I have posted about this before but I am really desperate now.
I have been suffering for just over a year and it is now really beginning to get me down. My hypothyroidism had been reasonably well controlled for the past seven years since having my liothyronine increased from 20mg to 60mg three times a day. I am also on 100 levo.
I had a full blood work up in July. This showed my vit D was slightly low - I was diagnosed with vit D deficiency three years ago and had been taking considerably more than the 800iu a day prescribed. I'd also been self medicating on B12 ( following what I had read on this site ) but again I had not been taking sufficient and this was a little low.
My main problem is that my serum ferritin was 29.9 ( 10 - 204 ). I saw an endo at Hull Royal on the 4th August. He said that I had symptoms of over AND under medication. Told me to continue on same dose of thyroid meds. He said that he was not aware that my vitamin and iron levels needed to be higher than non thyroid sufferers. But he said he was willing to believe that my low levels particularly of iron could be causing my problems. I was told to go back to my gp.
I saw a gp the same day, who was unhelpful but said she would write to someone at Grantham and would find out what levels my iron etc should be and how much I should supplement these.
I increased my vit D and B12 and I don't believe I've had any problems.
Unfortunately, I'm really struggling with increasing iron. I took ferrous sulphate 1 tab a day for two weeks. I stopped this because I could no longer take the feeling sick all the time.
I then took ferrous fumarate 1 tab a day for three weeks. Then increased this to 2 tabs a day. After a week of this dose my thyroid problems went a way. At last I did not have the constant head ache that I'd had for over a year. However, my tummy problems became much worse. I had bouts of constipation and sudden onset of diarrhoea. I needed to pass water both frequently and suddenly. I had constant, severe griping pains in my tummy. I put up with this for 3 weeks. I was on holiday and due to fly home and could not cope with this so I stopped the tablets. I intended to resume when I got home but thought I might as well give my tummy a rest. After three weeks my tummy was worse rather than better. My thyroid problems came back in particular the constant head ache, dizziness and shortness of breath. I saw another gp. He again was unsympathetic - basically said I am not anaemic and don't need to take iron tablets. He said there was nothing he could prescribe because my iron level is in the normal range.
There has been no reply to the letter sent by the previous gp. - he'll try and chase that up!
I resumed 1 tab of ferrous fumarate a day almost three weeks ago. Initially, my tummy was better but it did not last. I now feel really sick all the time. I'm suffering with sudden and desperate need for a toilet and don't want to leave the house. Wind is embarrassing. This dose is not enough to alleviate my thyroid symptoms - head ache, dizziness, shortness of breath etc. continue.
I really don't know what to do. I clearly need the extra iron but I can't tolerate it.
Several people on this site suggested I try sachets but when I've looked at them, they have very little iron in them and I clearly need a larger dose.
I just wondered if anything exists that a gp can prescribe if I can find a gp that is more helpful than the two I've seen. I also wondered if I'm reacting to something in the tablets rather than the iron as my symptoms are extreme.
I'd be really grateful for any help.
Regards
P/s I'm sorry this is so long but thought it was better than having to refer back to my previous post.
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dizzy864
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I wonder if your stomach is due to low acid as, if hypo, we usually are and that can cause other symptoms. It is surprising that doctors are so unsympathetic because we are seeing them because we have a problem which is interfering with our life.
Someone who is more knowledgeable re ferritin etc will respond.
In the meantime the following there are three links which might be helpful:
"II am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions"
Hi, thanks for your reply. I read the links you provided. It's very interesting.
I had also been wondering if low stomach acid was contributing or causing my problems. I've read that levothyroxine lowers stomach acid production and I've been taking that for almost 20 years.
I would really like to discuss my problems further with a consultant but am not sure what speciality this comes under. I'm also not sure I can persuade one of my gps to refer me as I've seen two and both were convinced that I don't have a problem. As I live in a village, changing to another surgery is not an option for me.
After reading the above, I find it a bit scary to self medicate on Betaine HCL capsules.
I have been a vegetarian for 40 years so am not sure how much protein I have in any given meal. Which makes it difficult to assess how much Betaine I should take.
Has anyone out there had any experience with Betaine?
I am not a vegetarian but had a problem with my stomach and whatever the GP prescribed made it worse but Betaine/Pepsin solved it and as long as I take it at mealtimes I've had no problems since. Others who are vegetarians might be able to give a hint or two as well.
Others also have gone gluten free and found that helpful overall.
Hi dizzy, to be honest I am surprised with this response as a ferritin<40ug/l is considered abnormal (I am assuming your 29.9 is in ug/l?). Have any other iron markers been measured such as Trasnferrin saturation and hemoglobin? I am assuming that if your GP is refusing to treat your potential moderate iron deficiency then your hemoglobin must be within the normal range?
If you are not able to tolerate daily doses of iron, intermittent iron supplementation (tablets 2 to 3/week on non-consecutive days) of ~60mg elemental iron per week has been shown to be effective in treating anemia and low grade iron deficiency though it takes quite a bit longer. You might want to consider trying this and bring it up with your GP. Unfortunately all current forms of oral iron therapy have shown a high incidence of gastro intestinal side effects. I know there are some new forms under clinical trial but it will be a few years before they are available on the market.
Hope this helps.
Regards
"I am not a practicing clinician and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions"
Hi, Thanks for your reply. My serum ferritin level was 29.9 ug/L. The range was shown as 10 - 204.0. Serum folate was 14.9 ( 1.8 - 18.3 )
A lot of other things were tested and were all within range but several of them were close to bottom of range.
Total white count 4.5 ( 4.5 - 13.0 )
Mean cell volume 84.0 ( 84.0 - 99.0 )
Neutrophil count 2.05 10..9/L ( 2.0 - 7.5 )
Monocite count -0.20 10.9/L ( 0.2 - 0.8 )
Basophil count 0.00 10.9/L ( 0.0 - 0.2 )
I have no idea what any of these mean. The endo I saw was not interested in discussing any of my results with me as they were all within "normal range."
I would like to discuss my problems with a consultant but I do not know what speciality this comes under. I expected the endo to know about stomach acid and absorption problems due to low vits and minerals. But the one I saw said he did not know about this. But stated it was possible.
I am very reluctant to cut down my iron intake - My thyroid problems went away on two a day, they are back on one a day. I think they would get worse if I cut back further on the iron.
You don't have a result for haemoglobin there - my bet is it will be bottom of female range, c 11. Because it will be within range your GP won't be worried, but your haemoglobin probably needs to be the same as the male lower limit, over 13. If you search for "haemoglobin" on this site you will find some discussion and references on this.
Try Ferrochel. It's in the Solgar range (easily absorbed. iron .. can't recall the name, will look). Try splitting the iron dose, whatever you take, taking it through the day, and start on a low dose, 20mg daily, and build it up according to how you feel.
If you can bear it, focus on eating red meats and things like black pudding, calves liver.... these are easily absorbed.
Keep changing the type of iron if one doesn't work - ferrous bisglycinate might work, for example. Avoid ferrous sulphate, obviously.
Take doses with orange juice or citric acid or biotin, whatever you can bear.
I agree that the fact that your blood results are in the absolute bottom of the ranges probably signals something going on.
You have an absorbtion problem, I would guess.
You can begin to exclude the possiblities yourself if the GP won't.
A celiac test can be got cheaply over the internet.
H pylori is a stool test.
Serum gastrin and tests for anti parietal cells are more expensive privately but can be got.
You could try taking some biotin tablets with meals to see if that helps with achlorydia, low stomach acid, normal with hypoT - I slug them down with orange juice.
Look at the symptoms of SIBO and consider if they might apply.
I too felt v dizzy and peculiar when I first went onto high doses of ferrous sulphate - it wasn't right for me, and I think starting slowly and building up is better.
• in reply to
But also - if you are suffering from hypo and hyper at the same time that will be playing a big part in your symptoms, clearly.
You need advice on that here from our leading non-doctors (!)
Thanks for your replies. I did have a haemoglobin concentration result - 135g/L ( 115.0 - 148.0 ) Is that what you were looking for?
I have just received a letter from my Gp - I'd been waiting almost 3 months.
It's mostly written in double dutch, I think.
It states that there are a number of "anecdotal reports of responses to supplements on patient support websites but there is a lack of consistency in dose, frequency etc."
It mentions a 2008 Pakistani report. Then concludes, "....no evidence-based medicine to suggest that patients on thyroid hormone replacement routinely need supplementation to attain ferritin, folate and vitamin B12 levels above those that would be considered routine."
There then follows ten small print pages of double dutch referring to various investigations that have been carried out. It refers to risks to various medical things I've never heard of etc that we may or may not have as thyroid sufferers. Lots of medical and scientific terms and statistical analysis way beyond my "O" level statistics of 40 years ago.
I think the one thing that is clear is that I am not going to get any help what so ever from my gp.
My gps will now be certain that my ferritin level is not causing me a problem. If I ask them for further help they will tell me that all of my problems are being caused by over medication on liothyronine. Although, the endo I saw said that it would be dangerous to reduce my meds, he did not put this in his letter to my gp in spite of telling me that he would.
Eating red meat is not an option for me as I'm vegetarian. I have always tried to eat iron rich vege food as I was very anaemic during pregnancy years ago. It doesn't seem to have been enough.
I will try to get some lower strength iron tablets and split them through the day. I'm taking 210mg with my evening meal together with 500mg vit C tablet.
Hi, the supplements I have used to raise iron are black strap molasses 1tbsp a day, spatone sachets (low dose of iron which is easily absorbed if taken with orange juice and no tummy ache). After a few weeks of these, my hair stopped falling out!! I've also heard good reports about lucky iron fish which they use in Cambodia. It's a little iron fish which you boil in water for 10 minutes, remove, then cook in the water which absorbs into your food.
I've ordered some gentle iron and some Betain HCL with pepsin tablets. I'll give them both a try.
I have to say that I am concerned about the low strength of the gentle iron - only 20mg although I have read it is more like 40mg as twice as much is absorbed. The ferrous fulminate that I've been taking is 210mg and doesn't seem to be sufficient to help with my thyroid problems. I needed two tablets a day to get my thyroid meds working again.
But if that is all I can tolerate, there doesn't seem to be an answer.
Can anyone tell me how long or quickly iron builds up in one's system?
Will I need to take iron supplements for life or does it build to a level when I can stop taking tablets?
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