Firstly, can I just say thank you for even reading this post.
My situation is, I was diagnosed hypo after I had my first child April 2017. My dose of Levothyroxine has been 200mcg since last September and GP's would not increase it. I have now finally been referred to an Endo following a miscarriage (which I believe may have been preventable + due to their carelessness).
My appointment is on 4th Sept but I have just had my recent blood test done, the GP confirmed T3 + antibodies would be tested by Endo but they requested the other tests.
I am feeling absolutely exhausted and still have all my hypo symptoms which I understand can sometimes be the same as low iron/b12/vit d.. but i would just like your opinions on this please. One GP thinks I may have absorption problems but these results have just thrown me off completely. I also feel likeI just do not know enough about this - are there any book recommendations you can suggest or other reading material. It absolutely infuriates me that I just do not have the ability to focus or concentrate on anything, my memory is terrible, I feel stupid like my IQ level must have decreased substantially.. sorry for rambling, but no one understands or even pretends to care..
Results:
1.Thyroid function test ABNORMAL – T4 NORMAL
Serum TSH level 0.13 mu/L [0.35 - 4.94]
Below low reference limit
Serum free T4 level 12.9 pmol/L [9.0 - 19.0]
2. Serum vitamin B12 level
Serum vitamin B12 level 292 ng/L [187.0 - 883.0]
Serum folate level Please note recent quality control issues may be leading to higher
than normal results, please interpret all results with caution. In
cases where folate level is borderline or low normal please consider
repeat testing.
Serum folate level 12.5 ug/L [3.1 - 20.5]
Serum ferritin level Iron deficiency.
If anaemic, please trial with oral iron and investigate blood loss.
Referral to Haematology outpatients not required for Iron deficiency.
Serum ferritin level 2 ug/L [10.0 - 204.0]
Below low reference limit
3. Full blood count ABNORMAL
Haemoglobin concentration 89 g/L [115.0 - 160.0]
Below low reference limit
Total white blood count 4.1 10*9/L [4.0 - 12.0]
Red blood cell count 3.91 10*12/L [4.2 - 5.4]
Below low reference limit
Haematocrit 0.322 [0.37 - 0.47]
Below low reference limit
Mean cell volume 82.4 fL [78.0 - 100.0]
Mean cell haemoglobin level 22.8 pg [27.0 - 32.0]
Below low reference limit
Mean cell haemoglobin concentration 276 g/L [310.0 - 350.0]
My worry now is that I may not even be offered antibodies testing (in which case I will scrimp and save for the medichecks tests) or I may not be offered T3 as my GP originally said it is likely for me to get it.
Ignore the TSH, it's what one would expect on 200 mcg T4. But, the FT4 is pretty low for that dose. How do you take your levo? Do you take it on an empty stomach, leaving at least an hour before eating or drinking anything other than water? Do you take any other medication/supplements at the same time as your levo?
Strange thing is that your TSH is saying '200 mcg levo', but your FT4 is saying absorption problems. So, how did you do the test? Did you do it early in the morning - before 9 am - after fasting over-night? Did you leave a 24 hour gap between your last dose of levo and the blood test?
Yes, taken on an empty stomach before I sleep (taken few hours after iron/heartburn meds).
Unfortunately, re the blood test - I couldn’t get an earlier appointment than 11am but yes it was fasting. I always refrain from taking a dose before testing. It’s just bizarre to me all this.. really thought I’d be getting somewhere but having come across this site, I consider myself lucky that I found this when I did.
So, how long exactly was the gap between your last dose of levo and the levo? If you take it at night, I'm guessing the gap was either about 12 hours, or about 36 hours.
I don’t think that 36hrs is that long, it’s not like you were measuring T3, T4 stays in your system. On 200mcg one would expect your T4 to be near the top and you’re on 200mcg in such a short space of time. 2yrs? Is that any increase every few months?
You can buy b12 mouthspray from Betteryou.
The Calcium is in range but I did think about your heartburn. My MIL had Hyperparathyroidism and we didn’t recognise that severe heartburn can be a symptom.
So my thyroid may not be to blame? Guessing it’s just my iron then.. phew! Now I feel even more stupid!! I just find it so difficult to time my meds well. I have to make sure my iron and heartburn medication is taken separately to levo - all require approx 2 hr gap.. i need to literally write this down and sort the timings out.. so sorry
Your thyroid is probably not to blame, no, but you cannot say for sure with your ferritin and B12 so low. Once you've got those under control, then you need to get your FT3 tested, to see how well you are converting.
No reason to feel stupid. You're not supposed to know all this, your doctor is. If he doesn't tell you these things - and he can't, because he doesn't know himself - the what are we supposed to do? We learn about our own disease and take charge. But, it's not easy. We can't go to med school, like he did. We have to read and read and read on top of our normal daily lives, and it all takes time and effort, at a time when we're least able to do it. It's a horrendous situation. But, you'll get there, I'm sure. Just don't beat yourself up about it.
Iron should be taken four hours away from thyroid hormone, and two hours away from everything else. But, your iron is so low that you're going to need more than a pill! You're probably going to need an iron infusion.
All other supplements should be taken two hours away from thyroid hormones, except calcium, magnesium and vit D, which should be four hours away.
Mean cell haemoglobin concentration 276 g/L [310.0 - 350.0]
Red blood cell distribution width 16.4 % [11.0 - 16.0]
All the above are saying, loud and clear, that you are very, very, VERY anaemic as a result of iron deficiency. It's rare to see such a low level of ferritin (iron stores) as yours.
If anaemic, please trial with oral iron and investigate blood loss.
Referral to Haematology outpatients not required for Iron deficiency.
Have you had any investigations for blood loss? The first and easiest test would be a check for blood in your poo (a faecal occult blood test). Make sure that you get one of those triple tests that are used for bowel cancer screening. In other words, you need to supply samples from three different bowel movements, not just one. Doing three samples maximises the chances of detecting blood if there is any. And to maximise the chances of getting an accurate result, please read this post and do your best to follow the instructions.
I am concerned that your doctor is expecting you to take iron pills to improve your iron levels. Frankly, I think this is sadistic. Taking iron pills to raise such desperately low iron levels will take ages. I had desperately low levels of iron and it took me nearly two years to get my ferritin to mid-range. You should ask your doctor to refer you to haematology for an iron infusion, despite what it says on your results about a haematology appointment not being required. An iron infusion will make you feel a lot better and improve your iron levels within hours. To leave you struggling for months or even years is sadistic.
I would suggest that you need an endoscopy to check the state of your oesophagus, stomach and duodenum, and a colonoscopy to check the entire length of your bowel.
Another option you may want to investigate and discuss with your doctor is this :
It allows far more of your intestines to be seen than a traditional endoscopy, but often the battery dies before it gets all the way through the gut, so it stops taking pictures part way through. How far it gets before it stops depends on how fast your gut works. Whatever happens, you eventually expel the capsule the normal way, although in a very small number of cases it can get stuck and needs to be removed with a small operation.
Note that not all NHS hospitals carry out capsule endoscopy. Many will only do the traditional endoscopy that doesn't see beyond the duodenum.
You may have crohn's disease or ulcerative colitis or coeliac disease (I'm only guessing - I have no medical training) and if you do it could cause you to absorb nutrients and thyroid meds very poorly.
Incidentally, a lot of your symptoms will be caused by your anaemia. There is a lot of similarity in symptoms between anaemia and hypothyroidism.
Another factor is that iron is required for conversion of T4 (from your Levo) to T3 (the active hormone). I suspect your T3 level is in your boots, and this will be adding to your woes and your symptoms.
I saw the GP and all he did was offer more ferrous sulfate tablets!
I asked about everything you mentioned - he tried to fob me off saying it’s because of my miscarriage but I have had Iron deficiency since about April 2017 which was treated. However, I think I’d had it for a long time before this with alot of the symptoms but I’d just never gone to the drs and once I was confirmed hypo, I put it all down to my thyroid but I’d previously had a healthy thyroid. He practically laughed when I mentioned a transfusion, said no way to any testing of stools. Just kept saying take this medicine and retest in 6 weeks - I’ve been on it for years!! Then he had the nerve to say it could affect my heart further down the line! Outraged
I think you need to see a different GP - the one you've seen appears to be a sadistic and incompetent ******. Is there another one in your practice that you haven't already seen? If you can't find another one in your practice who is half way decent then you should consider changing practice, if at all possible. Once you've moved practice you might want to consider making a complaint, and include a copy of your blood test results in the complaint highlighting the ones that I've mentioned in my earlier reply.
Which medicine did he say might affect your heart? The iron pills or the thyroid meds or something else? What dose of iron pills has he prescribed, and how many times a day? How well do you cope with the iron pills?
One of the problems with iron deficiency is that some doctors might treat it with a couple of month's worth of iron pills then not bother to test it again. You could be left severely iron deficient and anaemic or, if you are lucky, you might raise your haemoglobin and/or ferritin just enough to get it nearly into the range or into the range, and then they leave you to rot while your iron drops into severe deficiency level again. Personally I take a maintenance dose of iron because otherwise my iron-related levels drop dramatically and quickly.
Has your GP referred you to gastroenterology for an endoscopy and/or colonoscopy? I'm guessing from what you've said that he hasn't. I can't understand why he won't even check your faeces for blood. I'm sure it probably costs tuppence.
I just noticed you mentioned heartburn medication to greygoose . Can you tell me what you take, what the dose is and why you take it? When were you put on it? The reason I ask is that it many types of heartburn medication e.g. PPIs can exacerbate or cause poor absorption of nutrients from food, supplements, and medicines. We are led to believe by adverts and doctors that we have high stomach acid and that is the cause of heartburn and indigestion. But it isn't in the vast majority of cases. Heartburn and indigestion are actually caused by low stomach acid.
Just for your future reference, it is possible to buy prescription-strength iron tablets without a prescription. Learning this is what saved me - I started treating my own iron deficiency and testing privately with a finger-prick test. You would need to learn how to interpret your own blood test results or ask for help to do so on here. And it is essential to test fairly regularly. If this interests you, just ask.
jimh111 Do you know the cost of a faecal occult blood test? I know you've mentioned prices for thyroid tests before, so wondered if you had a list you could consult.
I just noticed you mentioned a "transfusion". The thing you need (probably) is an "iron infusion". Not quite the same thing, but it helps if you get the terminology right. I know that some people pay for private iron infusions and they aren't cheap. I've never had it done myself, but it might be worth doing. You could write a new post asking members for experiences of having an iron infusion, either on the NHS or privately.
Okay I have been taking Omeprazole for my heartburn since I was pregnant (20mcg) but i don’t take it now unless I am dying. Honestly nothing else helps, tried absolutely everything! And from reading on here, I cannot believe the Drs tell us we have high stomach acid. My poor sister has chronically had it and so has my Dad so maybe hereditary. I have really changed my diet but when I am in desperate need, I will take one a day for a few days until it’s calmed down. Honestly I can take pain and suffering but it doesn’t let me sleep and I literally cannot even speak it is that bad. The Drs just do not care at all.
My iron tabs - 200mcg ferrous sulfate 3 a day in total for 6 months but bloods tested in 6 weeks. Why do they never look into the cause of these vitamin deficiencies, it drives me bonkers
I am a complete idiot, ‘infusion’ is what I meant to say haha
I saw someone else’s post addressing everyone as ‘thyroid family’ and honestly, you guys are more caring and genuine than our own healthcare professionals! How pathetic
Regarding low/high stomach acid the links I've posted in this thread are worth reading. My post is the last one in the thread at the time of writing this.
I liked Chris Kresser's articles (mentioned in that link) because they helped me understand how low stomach acid causes heartburn and indigestion, something which sounded completely bonkers to me to begin with.
If you still have indigestion and heartburn then one way of dealing with it is to add acid to your stomach during a meal. Some people use betaine hydrochloride + pepsin supplements, some people manage with apple cider vinegar mixed with water and sipped during a meal.
Regarding betaine hydrochloride and low stomach acid, these links might be helpful.
You want one which is organic, unpasteurised and unfiltered. You need the sediment in it (known as "the mother") to help your gut. Give the bottle a shake before using.
With this vinegar, start off with a low dose - half a teaspoon and add it to a small glass of water. About 10 minutes before a meal start sipping it slowly. You want it to last to the end of the meal (I think). It is a good idea to sip it through a straw to protect your teeth. Rather than buying plastic or paper straws, you could investigate glass or stainless steel straws which are reusable, if you wanted to. After the meal is over, rinse your mouth out with plain water and then spit it out. You can clean your teeth after an hour. Acids from food and drink soften the enamel on your teeth, so brushing teeth too early will eventually remove it. Enamel has to be allowed time to harden before tooth brushing, and this apparently takes about an hour.
If half a teaspoon doesn't help, try a full teaspoon, then repeatedly add half a teaspoon until you see an improvement in your indigestion, up to a maximum of 1 tablespoon. (There are three teaspoons in a tablespoon.)
For more info, do a web search for "How to treat indigestion with vinegar".
If your symptoms get worse with either betaine hydrochloride or with vinegar then you may be one of those rare people who actually has high stomach acid, in which case you would have to stop taking either/both.
After I had a hip replacement, my haemoglobin was in my boots and they wanted to give me iron infusion. I refused and took my own regime of 25mg of vit. C with every iron tablet. Withing 3 weeks it was back to normal. I'm also on omeprazole for hiatus hernia and fully understand about lack of absorption of nutrients. Although you can bump up your hb with this method, you are quite right to ask for investigations as to WHY you are anaemic! could be low vit b12, could be pernicious anaemia, could be a slow bleed from a stomach ulcer. In fact it could be a myriad reasons; FIND OUT WHY! ps: excuse the English spelling of anaemia.
Not many GP's know this, (God knows why!) but if you take a 25mg vit C. tablet with every iron tablet; it will bump up your haemoglobin in no time. I am ex theatre sister and midwife of 45 years and they know NOTHING about nutrition! Google vit. C and iron absorption. Also so, DEMAND to see a Consultant Endocrinologist, they will understand your thyroid results far better than any Gp. I know one who advised my friend to take certain minerals, ie: iodine, selenium, zinc and more. (google minerals for thyroid health) for 6 weeks before he would retest her and they improved! My GP said that diet doesn't affect thyroid function......idiot, you only have to google "Derbyshire neck and cretinism" which was caused by the lack of iodine in Derbyshire soil because there is a lot of limestone here. The water authorities add iodine to drinking water now. Also, ask to have your d3 levels checked as low d3 can make you exhausted.
Forgot to say, your ferritin and B12 are much too low, too. humanbean has expertly covered the ferritin. But, you need to raise your B12, as well. Symptoms of low B12 are very much like hypo symptoms. If I were you, I would take 5000 mcg sublingual methylcobalamin (B12) daily. Plus a good B complex. (By 'good', I mean one with methylcobalamin, not cyanocobalamin; and methylfolate, not folic acid.) When the pot of 5000 mcg B12 is all gone, go onto a 1000 mcg for maintenance.
5mg of iron per dose is a very low dose and is unlikely to help many people to raise a severely deficient level of iron. I was taking a total of 207mg of iron per day for nearly two years, in the form of ferrous fumarate 210mg, one tablet three times a day. I'm not saying it is the best way of raising iron - I know it isn't. But it is cheap and easily available without prescription. The better supplements are ferritin tablets or heme tablets, but they are difficult to get in the UK and are expensive.
For meat eaters, eating liver is sometimes successful in raising iron. I think pig's liver has the highest iron content, but any kind is worth eating, either fried or hidden in casseroles or in the form of black pudding or paté.
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Can you give me advice on my blood results please?
Blood Test Help
Proof it were needed
Some blood test results
