LOW RDW-SD: My daughter has Hashimoto's and has... - Thyroid UK

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LOW RDW-SD

helsyf profile image
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My daughter has Hashimoto's and has been very symptomatic again recently with major digestive issues, fatigue, raised heart rate and swallowing issues...we got a private blood test as our surgery had a 4 week wait..it came back that she has low RDW-SD 33.90 should be between 37-49...does this indicate some form of anaemia?...she has been low folate and borderline B12 in the past

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helsyf
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SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

How old is your daughter

What are her most recent thyroid and vitamin results

how much levothyroxine is she taking

Does she always get same brand levothyroxine at each prescription

If yes, which brand

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

 

For full Thyroid evaluation she needs TSH, FT4 and FT3 tested 

Very important to test vitamin D, folate, ferritin and B12

Can you add recent results

Low vitamin levels are extremely common with Hashimoto’s

Recommended that all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test 

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3 and includes BOTH TPO and TG antibodies -£29 

randoxhealth.com/at-home/Th...

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

(Doesn’t include thyroid antibodies) 

monitormyhealth.org.uk/full...

10% off code here 

thyroiduk.org/getting-a-dia...

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

Only do private testing early Monday or Tuesday morning. 

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

helsyf profile image
helsyf in reply to SlowDragon

Thanks for all this info

My daughter is 28, she was diagnosed with Hashimoto's when she was 23 and like many has had a difficult journey, but at one point, for quite some time ,she was pretty good. Always have the same brand of Levo , which seems to suit her. One of her main issues is gut related and when she starts getting acid reflux/grinding etc this is usually a sign she is undereducated. In the past she has had folate deficiency . By the time she was first diagnosed she had a TSH of 30, so was very unwell. ...she feels well when her TSH is around 0. TSH recently went up to 4, and she was actually quite symptomatic, so she upped her dose. Latest private blood results showed TSH 2.12, T4 1.15 (0.93-1.71), T3 3.35 (2.02-4.43)..we have now tweaked her up again and is is on 100mc of Levo a day...adding another 50 has just taken her up to that, she is very slight in weight. Hoping this will bring down the TSH over the next few weeksThere are also signs she may be anaemic though which is why we privately got a full blood count. The only thing out of wack was the RDW-SD which was 33 range 37-49..My understanding is that this suggests she could have some sort of anaemia. Our GP surgery are not great, but we have a full test in in just under 3 weeks which should show vit D ,B12, iron etc...but I wanted to try and get it moved forward to get her started on any supplementation she needs. In order to do that I want to be armed with the facts about the blood test so I can stand my ground. We can't afford to get much more in the way of private tests...so I am trying to understand clearly what is happening in order to get treated sooner

SlowDragon profile image
SlowDragonAdministrator in reply to helsyf

Latest private blood results showed

TSH 2.12,

FT4: 1.15 pmol/l (Range 0.93 - 1.71)

Ft4 only 28.21% through range

FT3: 3.35 pmol/l (Range 2.02 - 4.43)

Ft3 better at 55.19% through range

Helpful calculator for working out percentage

thyroid.dopiaza.org/

Odd ranges …which company did the test?

Was this test done 6-8 weeks after being on constant unchanging dose levothyroxine and early morning and last dose levothyroxine 24 hours before test

what vitamin supplements is she taking

When were vitamin levels last tested

EXTREMELY common with Hashimoto’s to need to supplement vitamin D and vitamin B complex continuously to maintain optimal vitamin D, folate and B12

Many Hashimoto’s patients struggle to maintain good iron and ferritin levels

Is she on strictly gluten free diet or dairy free diet

If not get Coeliac blood test done via GP

Only 5% of Hashimoto’s patients test positive for coeliac, but further 81% find strictly gluten free diet helps or is essential

Similarly Approx 50% find dairy free helpful

helsyf profile image
helsyf in reply to SlowDragon

thanks for all this...whilst not posting on here before we have read a lot and followed all the advice ( a lot of it yours!..Thank You) the tests were done via onedaytests..we have used others in the past, but these are local and get decent reviews She has tried gluten free ...for about 6 months, but it didn't help...actually when her TSH is optimum , most of the gut problems seem to subside. We have been supplementing with B12 and folate..but have just stopped as we have the test booked. I think regardless of the test results (we all know they won't suggest supplement if she is only borderline) we will fully supplement ourselves once we have the results. We have tested negative for Coeliac. We always test for anything thyroid related first thing before meds and on an empty stomach. Her meds are taken religiously at the same time each morning. Always same brand, We don't know why she has had this blip, but guess that is part of the disease. The GP situation is frustrating...they do now let her adjust her meds according to how she feels though, which is great, but it seems you have to be right off the scale level wise for things like B12, iron, folate Fit D etc. for them to consider you in need of a supplement. Our full blood test is booked on 2nd June, sadly I don't think the private blood test showed anything dramatic enough for our surgery to bring that forward..but it does seem to indicate she has some sort of anaemia. I have contacted the clinic to clarify, but was just putting feelers out about RDW-SD which is where she is flagged up as being below reference. It has been a long time she she was tested for anything other than TSH or T4 at her surgery..it is getting harder and harder and she pretty much had to beg for this one we have coming up because she is symptomatic even though her TSH is moving in the right direction

SlowDragon profile image
SlowDragonAdministrator in reply to helsyf

we have now tweaked her up again and is is on 100mcg of Levo a day...adding another 50 has just taken her up to that

So how long had she been on unchanging dose when this test was done

What dose?

Did you increase dose to 100mcg daily after results?

Retest in 6-8 weeks

How long since she restarted eating gluten

Perhaps absorption has got worse since?

Did you get a ferritin result?

Request/insist on full iron panel test including ferritin

medlineplus.gov/lab-tests/r...

What do the results mean?

RDW results help your provider understand how much your red blood cells vary in size and volume. Even if your RDW results are normal, you may still have a medical condition that needs treatment. That's why your provider will usually look at your RDW results along with the results of other blood tests.

The combined test results can show a more complete picture of your red blood cells to help diagnose a variety of conditions, including:

Iron deficiency

Different types of anemia

Thalassemia

Sickle cell anemia

helsyf profile image
helsyf in reply to helsyf

after around 2 years on an unchanged does she got symptomatic, got a test done and TSH was around 4, T4 18. We upped the Levo to 5 days on 100 and 2 days on 75. We then checked 7 weeks after this change (the latest results) and we got the 2.12 TSH reading so are just about to put her up to 100 7 days a week. We are hoping this will move her in the right direction TSH wise back down to 0 which is where she feels good. We will re test that in about 8 weeks. We do have a full blood test booked with the GP which he assures us covers all bases...i.e B12, iron, Folate...will not be sure about Ferritin until I see the results...we will look at the results ourself because they so often say `normal` at the surgery and I believe very low end `normal` to warrant a supplement. I feel the RDW being low suggests some form of anaemia too...especially because her symptoms suggest that...although of course some symptoms of anemia are very similar to low thyroid symptoms. The absorption is interesting because I was wondering about that too....which could swerve us back to needing to get her TSH at her sweet spot level which is 0. I guess we are going to have to be patient (something I am not good at, but with thyroid disease it always seems to be a waiting game) get the test results from 2nd June with a view to supplementing after that, then test her thyroid again about 8 weeks from now to see if that has continued to improve. Meanwhile moniter how she actually feels...she has had some pretty bad days recently. Thanks for all your time on this...it is such a minefield isn't it?. We have little confidence in GPs..because of her age and because she is female for 18 months before they even first diagnosed her they insisted ALL her symptoms were anxiety. Poor girl could barely stand up. We had to push for tests and it came back with a TSH of 30 and full on folate anemia..B12 was borderline, right at them bottom of the scale so we supplemented that ourselves anyway...doesn't give you much faith, does it!Thanks again.

Litatamon profile image
Litatamon

What are you supplementing for the b12?

Doctors insist that even people with Pernicious Anemia (b12 deficiency) can absorb 1-2 % of b12 pills. But that does not always translate to real life testimonials.

You are in a precarious situation with the b12 testing. Because you have been supplementing & because doctors are often clueless in this area.

Please read up. These are great concise reads with footnotes to medical journals.

stichtingb12tekort.nl/engli...

stichtingb12tekort.nl/engli...

stichtingb12tekort.nl/engli...

stichtingb12tekort.nl/engli...

All the best to you both in figuring all this out.

helsyf profile image
helsyf in reply to Litatamon

thanks...you hit my dilemma on the head...we have been using a B12 supplement that we researched via this site that dissolves under the tongue 1000mg a day...in the past is has helped, but takes a while. When she is tested she will not have taken it for 5 weeks, but it may still skew the results. It is frustrating holding back on supplements until after the test, but we do want as clear a picture as possible. If things don't get back to good, we are thinking of getting a specific pernicious anaemia test and possibly exploring autoimmune gastritis. Trying not to jump ahead though, because as always with good old Hashimoto's, every step you take to put thinks right takes a while to have effect. There are times she has been pretty well on just T4 B12 and folate....problem with the whole digestive issues is that not only is she not absorbing nutrients, she is unable to eat properly and gets very thin...which has its own knock on effect too..thanks for the reads

Litatamon profile image
Litatamon in reply to helsyf

Be aware that the tests for pernicious anemia are unfortunately faulty, and even doctors do not know that at times.

The Intrinsic factor test sits around 50-60% meaning that a positive for antibodies concludes you have PA, but a negative does not conclude that you do not.

helsyf profile image
helsyf in reply to Litatamon

thanks...it really is a bit of a minefield...certainly learning a lot along the way!

helvella profile image
helvellaAdministratorThyroid UK

Did you get no other results?

RDW-SD is not measured, it is calculated from MCV (mean corpuscular volume) and some other factors.

RDW-SD on its own doesn't reveal very much. You have to look at the other results to understand why RDW-SD is low (or high).

(Corrected mistyped abbreviations.)

helsyf profile image
helsyf in reply to helvella

thanks...yes, spoke to the clinic who took the test and they said just that, it is sort of a secondary biomarker...we do have other results but none were low...near the bottom of the range, but not lower. Plan now is to wait (not good at waiting) until our next test on 2nd of June which should show Iron, B12, Folate etc specifically..avoiding supplements until we have the result to get a clear picture, then supplement ALL the low ends...even if they are not clinically regarded as under

helvella profile image
helvellaAdministratorThyroid UK in reply to helsyf

Do you have the other results?

If so, please consider posting them. Another two weeks or so allows further suffering. (And add on time from those 2nd June tests to actually get something done about any issues identified.)

helsyf profile image
helsyf in reply to helvella

the other results all show nothing abnormal...I was hoping they would ,so I could try and chivvy my surgery along with the next test. We are also still waiting for the higher dose of Levo to kick in too...that in itself may put her right,(go give good improvement) it has in the past. I am finding the wait frustrating, but wait we must...she had a good day yesterday, fingers crossed the Levo starts to kick in more and we can start knocking her back into shape fully after her test. As you know, deficiencies symptoms are often very similar to under medication.

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