I was diagnosed with autoimmune hypothyroidism in June – very unexpectedly, I’d gone to the doctor with what I thought at the time was something else. I was suffering from stomach pains. As I didn’t really have any other major symptoms that screamed hypothyroidism, other than some fatigue, and my TSH was 5.24, the doctor gave me the choice as to whether I wanted to try a trial of levothyroxine; either that or wait for TSH to go above 10. I decided to go with it as I don’t want symptoms to get worse.
My iron levels were also low, which was what initially triggered the blood tests being done for thyroid:
Iron: 9.4 mcg/l (11-30)
Transferrin saturation 11% (16-50)
I started a trial dose of Levothyroxine of 25mcg . I also took iron supplements (210mg twice a day = 69mg elemental iron) for 10 weeks prior to the next blood test, taking a week off the week prior to the test. I took advice from other posters on this forum and took B supplements, vitamin D/K, Magnesium, and vitamin C with the iron
Anyway, I had another blood test after 6-7 weeks my iron has barely changed:
Iron: 11 mcg/l (11-30)
Transferrin saturation 15% (16-50)
It is in range as my GP pointed out, but it is right at the bottom after taking all those supplements. My TSH has gone from 5.24 to 4.14. Not much of a change at all. I feel no different to a couple of months ago!
My doctor previously sent me for a gastric endoscopy and then ultrasound for the stomach pains, with nothing untoward found. She has now offered to send me to a GI specialist. She is also puzzled as to why I don’t seem to be hanging in to iron very well. When she asked how I’d like to proceed, I suggested that I thought it might be hypothyroidism causing the stomach issues, and also affecting my ability to absorb iron, so my levothyroxine dose should be increased. I don’t think she was particularly convinced, but she did say she liked to get patients’ TSH down to 1-2. If that is the case, then why didn’t she offer to increase the dose before I asked?! She was going to continue with the current 25mcg dose and treat the stomach issue as something separate.
Anyway, I’m pleased as I came out of the surgery with what I wanted, an increased dose of levothyroxine (50mcg for now). I declined the option of being referred to a GI specialist for now. But it is quite disconcerting, as many others on this forum have pointed out, that GPs don’t seem to connect the dots when it comes to different symptoms, and want to treat them all as separate, unrelated conditions. I honestly feel like I know a lot more about the condition than the doctor (I’ve done a lot of reading since my diagnosis, both on these forums and published studies). Anyway, I know I’m lucky in that my doctor did listen to what I wanted to do, as I’ve seen that others on this forum have been dismissed and treated badly by their GPs
In my opinion, I think getting the thyroid issue optimally treated should be the first priority, and then see how that leaves me feeling.
Anyway, other than wanting to vent these views (sorry for the long post), my actual question was related to iron. Is it unusual to take iron supplements for 10 weeks and see so little change in levels? How long will I have to take supplements to see any change? Should I up the dose from 2x 210mg tablets a day, to 3x tablets a day? (The enclosed leaflet says 2-3 tablets to treat anaemia). Will my iron levels ever improve whilst my TSH is raised?
I have posted blood results below from June, and also the most recent test just done at the end of August.
PS. thank you to everyone who posts on this forum, the information and advice has been invaluable to me, so glad I found you all
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Crazy_CatLady
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Hi, I cannot answer your question about iron, but I think it would take longer for your iron to rise. Others who know more about iron will respond, but your dose of levo is very small. 25mcg is a supplemental increase or if someone is very frail with a heart disease. I am glad your doctor suggested prescribing levo as your TSH was 'out of range' although they have been given instructions (for some unfathomable reason directed by the British Thyroid Association) to only prescribe when TSH is 10 and with people suffering unnecessarily so.
You should have been prescribed 50mcg to start with and increases of 25mcg around every six to eight weeks until your symptoms resolve. Too low a dose can rebound and make us feel worse. The aim is a TSH of around 1 or lower although, again, doctors make the mistake of stopping increases when anywhere in the range when it should be 1 or below.
When hypo (slow) we are more likely to get Hypochlorhydria (meaning low stomach acid):-
The symptoms of low or high acid are so similar doctors are apt to prescribe antacids.
Everything in our body is affected when low in hormones, I myself had severe nausea then stomach problems. GP prescribed antacid and the pain was awful I stopped it and switched to Betaine with pepsin and take one after a meal with protein, in particular, and I've had no problems since.
I did think 25mcg was too low, but I didn't want to argue, I'm just glad the doctor didn't make me wait until my TSH had reached 10 before prescribing. I've just moved up to 50mcg now, which is still probably low, but hopefully she'll keep prescribing higher doses as time goes by and my TSH still hasn't gone down.
My doctor did initially prescribe proton pump inhibitors, but they did nothing, and neither did antacids. Which is not surprising if the cause is actually low stomach acid!
I think your low iron - which hasn't risen much (don't doctors make you laugh with their attitudes to ranges! not) and your high TSH - which hasn't decreased very much - could symptoms of the same thing, rather than separate issues, or one causing the other : low stomach acid - which is a frequent problem for hypos. You obviously have an absorption problem. You're not absorbing your iron and you're not absorbing your levo. The low acid could also be the cause of your stomach pains, as undigested food ferments in the stomach.
If you wanted to test your acid level, you can do something very simple - although not very scientific! Just dissolve one teaspoon bicarbonate of soda in a glass of water, and drink it. Then see how long it takes you to have a good burp! The longer it takes, the lower the acid.
So, what do you do if you do have low stomach acid? You try taking half a teaspoon of apple cider vinager (organic, withy mother) in a glass of water with honey, or a glass of juice, before every meal, and see how that helps your digestion and absorption.
You can also take vit C with your levo to help it absorb.
Thank you for the reply Greygoose. I had suggested the idea of low stomach acid causing my stomach pains to my doctor after I got my initial diagnosis, but she seemed to ignore it and brushed over it. I had also come to the conclusion that that could be impeding my iron absorption, hence declining to accept a referral to a GI specialist at this point. As my symptoms were similar to high acidity, I had been prescribed proton pump inhibitors, but of course these did nothing, so I stopped taking them.
As she seemed to brush over the low acid idea, I did try the experiments with the bicarbonate of soda, on three consecutive mornings. I didn't burp once! However, on one day I got a friend to try it as the same time as a kind of control, and she didn't burp either, so we concluded that either the test wasn't reliable or she also had low acid.
Bit of a vicious circle really, isn't it: Iron needed for proper thyroid production, thyroid needed for good iron absorption.
I think I will try the apple cider vinegar, see if that helps. Is there any particular brand I should get or place to buy it?
I'm sorry, I can't advise you on brands of ACV. I cannot bear to have it in the house, myself! lol But, it's perfectly possible that your friend also has low stomach acid. I'm sure low thyroid isn't the only cause.
Unfortunately, the symptoms of low acid and high acid are the same. Doctors are not taught about the possibility of low acid - which is probably why your doctor didn't respond to your question - and automatically think of high acid, and throw PPIs at you. Which, of course, just make the problem worse!
There are lots of vicious circles in thyroid problems, I'm afraid, because all these things depend on each other, and when one thing goes wrong, they all spiral out of control.
But try the ACV - all I know is, it has to be organic and with the mother still in the bottle, all cloudy and natural! lol If that doesn't work, there are other things you could try, like Betain. But, I haven't tried that, either. I don't have a digestion problem, strangely enough.
Has the mother, matured in oak casks, comes in a glass bottle so no nasties from plastic. You can get it from Amazon and some supermarkets as well.
Build up gradually, I take one tablespoonful now. Put some honey, to taste, in a mug, warm water to dissolve it (I make half a mug full), then when cooled a bit add the ACV (shake the bottle first to disperse the Mother as it settles in the bottom of the bottle). Drink through a straw to protect tooth enamel.
I tried Betaine HCl first, got up to about 6-8 capsules during a meal, didn't work for me.
Oh dear, that's not good. To be honest though, I just use a bit of honey to take away the acidy taste of the ACV. Doesn't taste much of honey at all and it doesn't really taste like ACV, just sort of neutralises the taste.
It does seem unfortunate that such a small amount caused a problem. Not sure if starting with even a lower amount would help.
Alternatively, for low stomach acid you could try Betaine HCl with Pepsin. It didn't work for me (where the ACV did). Some people only need 1 capsule with a meal, others need more. I got up to 6-8 capsules during a meal and still it didn't help. You have to take them with a meal that contains protein and during the meal, never on an empty stomach. Plus you need plenty of water when taking them. The capsules are better than tablets, if a tablet gets stuck then it could burn your oesophagus, with a capsule the shell has to dissolve first. For info on low stomach acid look here scdlifestyle.com/2012/03/3-... and scroll down for the Betaine HCl info.
Thank you for the info. Not sure whether it's worth trying a more diluted ACV. If ACV hurts my stomach, I wonder if betaine-HCl will too. Probably worth a try though
Well, whatever the reason - stomach acid, inflammation, declining nutrients in foods etc - a lot of us seem to have nutrition and/or absorption problems. Did you say they put you on PPIs or they wanted to? That won't have helped.
The good news is that, as you said, it sounds like your gp is relatively on the ball and is listening to you. What a civilised solution, to tell you your tsh is just over range and offer you the option of treatment. There are things that conventional gps generally do not accept - adrenal fatigue, wheat intolerance, low stomach acid etc etc - but 'subclinical' hypo can be a tough nut to crack, so I'm heartened to hear of your experience. I hope your levo makes a difference to you.
Did anyone suggest trying a gf diet? There is some reason to believe that if your gut is inflamed it may inhibit absorption and you may find your supplements stick better. The only thing gf did for me was to help me get my vit d back to normal (or at least it seemed there was a correlation, I was also taking high doses but that hadn't been much help for a long time). Some people find it v helpful, and it is at worst a harmless experiment.
I had very low iron and ferritin. I took 3 x 210mg ferrous fumarate per day for nearly two years to get my ferritin up to optimal levels. Despite optimal ferritin the other iron measures I had tested were still a bit below optimal, but not by much (except my TIBC which is always below range or low in range).
One of the problems I still have with iron is that finding the right dose of iron supplement to keep my levels optimal is very hard. I either end up building up levels of ferritin which are too high, or my levels drop like a stone.
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