I would love some advice from this group since I trust this more than the doctors I've seen!
Last March (2021) I was diagnosed with hypothyroidism but after a year of suffering I think I should also have been diagnosed with anaemia too. I came to this conclusion by comparing my December tests to the many others I’ve had this year and realised my folate levels are low.
I’ve got about 8 pages of results so I’ll give the results of what I think you need but can send pictures if you want to see more - a lot has been tested.
I am taking 100mg levothyroxine but I think I'm over medicated because I’ve been trying to treat undiagnosed anaemia. I’ve had the same brand (accord) but have increased from 50-100mg since I was diagnosed. I am also on a gluten free diet based on the advice of this group.
I take my pills at night and take 50mg vitamin d and liquid iron in the day.
I am very ill at the moment, I feel sick, I’m out of breath, exhausted and have really bad headaches.
Due to covid, I'm struggling to get appointments with the doctor and it’s always such a fight to get what I need. I realise this is a common problem and I’m not alone but it’s frustrating.
Based on research I’m likely to need 5mg folate and B12 injections, would you recommend in trying to source this myself or wait for a GP appointment?
Results:
March 2021 pre diagnosis
TSH: 5.59 Range: 0.27-4.2 mIU/L
T4: 14.3 Range: 11-21.2 pmol/L
Folate: 4 Range: 3-20 ug/L
Ferritin: 80 Range: 13-150 ug/L
Vitamin D: 90 Range: 50-150 nmol/L
July 2021 - 100mg Levothyroxine
TSH: 0.08 Range: 0.27-4.2
T4: 28 Range: 11-21.2
T3: 7.4 Range: 3.10-6.8
December 2021 - 125mg Levothyroxine
TSH: 0.47 Range: 0.27-4.2
T4: 21.5 Range: 11-21.20
Folate: 3.6 Range: 3-20
B12: 283 Range: 197-771
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KE12
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Thanks for confirming my suspicions, I thought they were low too despite being in the range provided.
The only vitamins I'm taking 50micrograms of Vitamin D and 20ml of iron per day.
I asked the dr for a test but he refused because my haemoglobin levels were normal. 144g/L (115-155) and he said I'm not anaemic.
I've attached the full blood count for reference.
I am therefore left with no choice but to take matters into my own hands but could do with some advice on the folate dosage. Most brands are 600 micrograms but would you recommend taking a higher dosage of 5 milligrams instead since I'm so deficient?
Based on the advice from this group, where possible I test before eating and drinking anything. I told the endocrinologist this and he didn't believe it would make a difference
🙄
I have had thyroid antibodies tested - these were my results in March 2021: <15U/ml (0-34).
Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
There are four different kinds of B12 supplement available. The best one is methylcobalamin which is an active form of B12 that requires no conversion to another form for the body to make use of it. Definitely avoid cyanocobalamin, an inactive form which does require conversion and not everyone is good at that. With a result as low as yours, ideally you should be tested for Pernicious Anaemia before supplementing B12 and Folate, but since your B12 result is in range I don't know what your chances are. You could join and read posts on the Pernicious Anaemia Society Forum here on Healthunlocked and ask for advice on there :
FolateYour folate is too low. Optimal is upper half of the range, so roughly 12 - 20 with your range. The best supplement for folate is described in this article :
With a low level like yours I would suggest that you should be taking 1000mcg per day for three months then retest. Once you've got your level high enough you should reduce dose to 400mcg per day.
Ferritin (iron stores) A level of 80 ug/L with a range of 13 - 150 is very good. Some people feel best with a level of 90 - 110. Higher levels than that should be avoided because iron in excess is poisonous. Note that supplementing iron should be avoided until and unless you've had a full iron panel done and have shown that serum iron and ferritin are not already too high. The reasons for this are given in this thread - and please read the replies too :
You mentioned anaemia. There are many causes of anaemia, not just low iron. For example, low B12 and/or low folate can cause anaemia. You might find this link useful for reference :
You are absolutely right, the dr wouldn't test because it was in range as well my haemoglobin count which he said is the marker to diagnose anaemia. I've included results in my reply to Slow dragons response. And trust me, I argued for it!
I'm going to take your advice and get 1000mcg of folate and B12 too. I might take a look at increasing ferritin but only once I've retested the B12 and folate to see if that makes a difference.
I've already upped my Vitamin D to 50mg so it should be higher that what it was when originally tested.
The links are really useful and I've joined the anaemia group also.
Pre diagnosis you had hjgh TSH, low FT4 but no FT3 result.
Folate low but no Vit B12 result.
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July 2021 - 100mcg Levo
Assuming thyroid hormone results are ‘free’, TSH low as expected considering FT4 & FT3 are now over-range.
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Dec 2021 - were tests conducted at a different time in day because TSH raises as FT4 slightly falls in spite of a 25mcg Levo increase? And why was Levo increased when previous FT4 & FT3 were over range?
Folate still low and VitB12 low also. Agree with SlowDragon to pursue investigations regarding anaemia diagnosis.
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Over medication of Levo is common in undiagnosed/unsupplemented anaemia because symptoms overlap with hypothyroidism. Also thyroid meds (Levothyroxine) often won't work well in the presence of anaemia so compounding/amplifying symptoms.
If I were you I would retest thyroid hormones according to certain protocol (forums or own) to get a base line of where thyroid hormones lie, and adhere to same for future tests.
Ask your GP for a full iron panel, FBC and testing for PA, ie parietal cells & intrinsic factor Ab's. Do not supplement until tests are completed. Also in light of fluctuating FT4, ask for thyroid hormone antibodies TPOAb & TGAb to be tested. Post results complete with ranges (number in brackets) for members to comment.
You're right, B12 and T3 were not tested annoyingly. I didn't even know what what wrong with me at this stage and the dr ordered a few things to test. And since then, there's little consistency in the testing.
The endocrinologist I saw said I was overmedicated, but because I have never felt better, I have pushed my GP to increase my dose. I never considered I had something else wrong with me because nothing else was mentioned by any dr I've seen.
It's from this group that I am learning that so many other things are associated with an underactive thyroid and I compared my results across last year and noticed things in the lower ranges.
As of a few days ago I've gone down to 100 and will test again with my folate and B12 and consider reducing it further as I agree I'm overmedicated in trying to treat the wrong thing.
The December tests were done in the afternoon - I know this is not in line with the recommendation of doing it in the morning and 24 hours before but this was the only time I could fit it in. I find it amazing that you are able to tell that from my results - it's this level of knowledge and detail that is missing from most endocrinologists and why I trust this group!
I've had a FBC which I've posted a copy of in Slow Dragons reply, but my dr won't test for PA because my haemoglobin is 144 and within the range (115-155).
I know you've all said not to take anything before testing, but in absence of any help or tests from my GP I'm going to get some supplements and try this on my own and test the levels again in 2 months.
I find this group an invaluable source of information and I don't know where we'd all be without it. Thank you so much! ❤️
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