Hi, I've posted on here several times over the last few weeks about my 18 year old daughter and we're really grateful for all the helpful advice we've received. My daughter has a possible diagnosis of secondary hypothyroidism, although her endo seems quite unwilling to make this a firm diagnosis.
Since I last posted several weeks ago, my daughter has started on a very low dose of Levothyroxine - 25mcg for two weeks and this was increased two weeks ago to 25mcg/50mcg on alternate days. My daughter had an initial burst of energy about a week after starting Levo, however this didn't last very long and before too long she was back to feeling exhausted, fluey and generally unwell.
She had some blood tests carried out at the GPs surgery yesterday and her ferritin came back at 15.3. However, when it was tested via Medichecks just two months ago it was 75 which at the time we thought was very surprising - her previous ferritin results done by our GP (over the last 6 years) have been 27, 20.7 and 18.3, so we're wondering whether the Medichecks result was a mistake. Has anyone else received an odd result from a Medichecks test?
We are slightly baffled by the very low ferritin levels as in an attempt to keep her nutrient levels up, my daughter has been taking daily beef liver capsules for the last two months as she hates eating liver. In addition to the low ferritin level, she also had a full blood count done yesterday which showed a slightly below range haemoglobin level of 119 (range 120 - 156) which I guess goes hand in hand with with low ferritin and indicates possible anemia?
When I posted a few weeks ago, several people suggested that she might have Coeliac disease, and this is something we still need to look into, although it's complicated by the fact that she eats very minimal gluten as bread doesn't really agree with her. In addition to this, she has an IGA deficiency which makes testing for Coeliac disease slightly more complicated and this is something we need to raise with her gastro.
I'm not sure whether my daughter should now be taking iron tablets, however as she already suffers from a very sluggish digestive system this isn't a very appealing prospect! We would be very grateful for any suggestions as to what we can do to raise her ferritin levels. Many thanks!
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There has always been this anomaly with ferritin results with Medichecks compared to GP tests, my Medichecks ferritin tests are always a lot higher than GP tests and others have found differences too. Take a look at this member's post and check out the links to her other related posts, she took this up with Medichecks and you can see their response:
her previous ferritin results done by our GP (over the last 6 years) have been 27, 20.7 and 18.3,
In addition to the low ferritin level, she also had a full blood count done yesterday which showed a slightly below range haemoglobin level of 119 (range 120 - 156) which I guess goes hand in hand with with low ferritin and indicates possible anemia?
Stick with the NHS results and discuss this with your GP. Point out the following:
In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
GP needs to do an iron panel to confirm iron deficiency and her below range haemoglobin already suggests anaemia. So she could very well have iron deficiency anaemia and her GP needs to treat and regularly monitor her levels.
Many thanks for your reply - that's very interesting that other people have had dubious ferritin results from Medichecks, I had no idea about this! My daughter also had her vitamin D3 and B12 tested at the GPs yesterday and these results were also lower than her previous Medichecks results, although they were still pretty healthy so I'm not concerned about these, the ferritin is very odd though.....
When you had the Medichecks blood tests done, was CRP included in the bundle? If so, was it high? High CRP - and inflammation marker - and high(ish or er) ferritin go hand in hand. If starting the levo had reduced her inflammation, it is possible that the ferritin would drop, too. Just an idea.
Why did her doctor start her on such a low dose of levo? 25 mcg is a dose for infants and old ladies. At 18 she should have been started on 50 mcg every day. Starting patients on too low a dose is likely to make things worse, rather than better.
I expect her endo was reluctant to diagnose because he doesn't really understand what Secondary hypo is all about. It is considered to be rare - it actually isn't at all rare! - and therefore they just don't learn about it in med school. It makes them uneasy.
If testing for Coeliac is difficult, why bother? The only treatment is going gluten-free, and she can do that without a diagnosis of Coeliac. It sounds as if gluten doesn't agree with her, anyway, so just cut it out. Why prolong the agony?
It also sounds as if she has low stomach acid, which is frequant with low thyroid hormones. Get her to read this article and try the home test at the end:
Thanks for your reply, Greygoose. My daughter's CRP was included in the Medichecks bundle and it was came back at 2.39 so it doesn't look as though there's any inflammation.
We're still unsure as to why my daughter was started on such a low dose of Levo, although her cortisol is also low so I think her endo was concerned that a higher starting dose might affect her adrenals. So far she's had absolutely no side effects from the Levo but not much benefit either, so we're hoping it will be increased to a daily dose of 50mcg when we go back to see the endo next week.
Well, with CRP, the lower the better, so might have had some effect on the ferritin. I don't know.
Low cortisol is not a good reason to have started her on such a low dose of levo.
There's no reason why she should have side-effects from levo. Why do you mention that?
But, she can't expect to have any benefits on such a low dose. These doctors just don't understand how it works. The dose she's on is high enough to stop her thyroid producing hormone, but not enough to replace it. So, the effect is to lower her thyroid hormone levels, rather than increase them. So, the patient can very often feel worse, rather than better.
My daughter's CRP was included in the Medichecks bundle and it was came back at 2.39 so it doesn't look as though there's any inflammation.
I would take that result as there is posibly some inflammation there, maybe not much but some. CRP is best as low as possible, so bottom of range would mean no inflammation.
To illustrate this I have lots of tests done with CRP (and ferritin at times). I have lung disease so there's always going to be some inflammation showing and when I have an exacerbation it's higher. When I don't have an infection/exacerbation my CRP sits around 2, it can go up to 5, 6 or 7 when I have an exacerbation (range is <5).
My daughter had an initial burst of energy about a week after starting Levo, however this didn't last very long and before too long she was back to feeling exhausted, fluey and generally unwell.
This reaction is very common, and it is your daughter's body telling her she needs more Levo. Her dose is ridiculously small. Hopefully she doesn't have to wait long to get some dose increases. The NICE guidelines for hypothyroidism (which mention, but don't really cover secondary hypothyroidism) have this advice on dosing Levo for primary hypothyroidism :
The dose of levothyroxine (LT4) should be individualized on the basis of clinical response and thyroid function test (TFT) results. Treatment must be monitored regularly to determine an adequate dose and to avoid both under- and over-treatment.
The NICE clinical guideline recommends:
Consider starting LT4 at a dosage of 1.6 micrograms per kilogram of bodyweight per day (rounded to the nearest 25 micrograms) for adults under 65 years of age with primary hypothyroidism and no history of cardiovascular disease.
Consider starting LT4 at a dosage of 25–50 micrograms per day with titration for adults aged 65 years and over, and adults with a history of cardiovascular disease.
The British National Formulary (BNF) recommends:
For adults aged 18–49 years — initially 50–100 micrograms once daily; adjusted in steps of 25–50 micrograms every 3–4 weeks, adjusted according to response; maintenance 100–200 micrograms once daily.
For adults aged 50 years and over, with cardiovascular disease, or severe hypothyroidism — initially 25 micrograms once daily; adjusted in steps of 25 micrograms every 4 weeks, adjusted according to response; maintenance 50–200 micrograms once daily.
Advise the person to take LT4 medication on an empty stomach in the morning before other food or medication.
I can't really see any reason why secondary hypothyroidism needs to be treated more cautiously than primary hypothyroidism. Your daughter should be given dose increases until her Free T3 is around 60% - 80% of the way through the range, or until her symptoms are gone. But I don't know what rules endos use for treating secondary hypothyroidism.
It will be harder to decide on a reasonable dose of Levo while she has poor levels of nutrients. Symptoms of low nutrients have a lot of overlap with symptoms of hypothyroidism.
I've looked back at previous posts and seen that the ferritin level is going up and down like a yoyo.
...
Is there a chance that your daughter is losing blood in her poo due to coeliac disease or some other bowel disease e.g. ulcerative colitis or Crohn's Disease?
Or are her periods incredibly heavy and/or very long?
Regarding ferritin, it has become clear to quite a few people on the forum that there is a problem with ferritin testing. Some companies produce results which look really good, others produce very low results. Nobody knows the cause of this, nor what to do about it, nor who can be believed. At least the results you've got from the NHS are consistent and consistently low, so I would be more likely to believe those than the Medichecks result.
The fact that your daughter is anaemic (low haemoglobin) definitely suggests her iron and/or ferritin (iron stores) are too low, so she should be taking iron supplements. Some people don't tolerate iron supplements very well. The higher the iron content the fewer people tolerate them.
Doctors usually prescribe ferrous sulfate. It contains 65mcg iron per tablet, and is the cheapest one that doctors prescribe. It is also as rough as anything, and lots of people can't take it. I felt like I'd swallowed a glassful of strong acid when I tried them.
I raised my iron with ferrous fumarate 210mg, 1 tablet, 3 times a day, but I had to take it with food.
If I had my time over again I would at least give ferrous gluconate 300mg a try. (They can be bought without prescription in pharmacies in the UK.) Adults can take between 1 and 6 tablets a day, and each tablet contains 35mcg iron. It might be easier to find a tolerable dose with this.
Another post on the subject of iron that you might find of interest is :
Hi Humanbean, many thanks for your reply, your comments about ferritin testing are very interesting - I think we will definitely stick with our GP tests for now!
My daughter doesn't have particularly heavy periods but she does have many digestive issues caused by her hypothyroidism or possibly vice versa. I'm wondering whether her low ferritin and haemoglobin are caused by some sort of malabsorption issue as her diet is full of iron rich foods. She doesn't really tick the boxes for Crohns disease or Colitis and her calprotectin levels were normal when tested last year; however, this is something we need to take up with her gastro who has already suggested that she ought to have an endoscopy to investigate her ongoing abdominal pain. She also has horrible constipation so we'll need to think quite carefully about iron supplements.
I have problems with constipation. My usual method of keeping it under control is to take magnesium citrate and vitamin C.
I bought my magnesium citrate from Ebay or Amazon, in (food grade) powder form. You can also buy it in capsules. As powder it is cheap - but it tastes fairly vile and I put it into orange juice. Another version of it is called Natural Calm, which is actually palatable.
Taking magnesium supplements is very common on the forum, and lots of people suffer from magnesium deficiency. It appears to be a global problem. There are other versions of magnesium supplement other than citrate, but they aren't all good for constipation :
If things get really bad then I use sodium picosulfate, also known as pico liquid, but I use it as rarely as possible. It can be bought without prescription from pharmacies. It isn't necessary to buy the branded product Dulcolax. Other brands are available and quite often cheaper.
Many thanks for the links - I hadn't seen these articles, although my daughter has been trying various forms of magnesium since the Movicol stopped working for her two years ago. She has tried Natural Calm but it had little effect even at a very high dose which was disappointing as it has such good reviews on Amazon.
She's currently taking Oxytech from Dulwich Health - dulwichhealth.co.uk/product... seems to work okay although I'm not sure it's as brilliant as all the reviews on the website make out!
She also takes Prucalopride several times a week, this worked really well for a year or so but then stopped being so effective like most laxatives do. Her gastro has also prescribed Linaclotide which was unusable as it had such unpleasant side effects - we're still on the look out other options, although we're really hoping that once she's on a proper dose of Levo her constipation will improve.
If the rectum gets blocked then getting anything out can be difficult or impossible. Personally, I can't see the point of taking something that goes through my entire system if the problem is right at the end.
There are a few products that help with this and they can be bought from pharmacies without prescription :
When I posted a few weeks ago, several people suggested that she might have Coeliac disease, and this is something we still need to look into, although it's complicated by the fact that she eats very minimal gluten
Request GP run coeliac blood test now, but if only eating low gluten test almost not worth doing
Hi, I just wanted to chip in and say you have had good advice here - your daughter needs more Levo and I would agree she definitely needs tested for Coeliac disease as it sounds very possible from your description that she has it. Yes she could just cut out gluten now, but personally I’d want a firm diagnosis as it’s something she will then live with for the rest of her life - for me it would be a case of being taken seriously by the outside world for a start . Lots of people avoid gluten for all sorts of reasons, including to avoid calories and so on, some are genuinely gluten intolerant and some not, but as we know Coeliac disease is something else again - a serious medical condition that needs strict management.Your daughter also has IDA (iron deficiency anaemia). This is often seen along with autoimmune disease in particular coeliac disease. She needs treatment for this. If it is a possibility then a private iron infusion is the fastest way to raise her Ferritin and haemoglobin. (In the UK you can get this done in Manchester and London). If she takes Ferrous Fumarate then ignore any GP advice and tell her to take ONE tablet a day as the body can’t absorb any more elemental iron in 24 hrs. She will just get gastric upset and then won’t comply.
Good luck with it, I have a daughter same age with similar issues!
Hi csj113, thank you so much for your reply - I really appreciate how much help and support we've had from you and everyone else who has responded. You're absolutely right in that it would be far better to try and rule out Coeliac disease once and for all rather than simply trying to steer clear of gluten where ever possible. My daughter is IGA deficient, so I believe this will need to be done via a biopsy and endoscopy.
We've been investigating iron infusions as there's actually a consultant lead iron clinic very close to where we live; it has great reviews and definitely sounds appealing as my daughter is really not keen on iron tablets as she already has awful constipation.
I know you replied to my last thread and mentioned that your daughter had similar symptoms, is she now starting to feel better? I think you said she had headaches and sore throats? My daughter has the same along with intermittent ear aches and a hoarse voice. We're really hoping that these symptoms will start to improve when her endo increases her Levo (hopefully next week).
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