Hi everyone - last year I had a thyroid biopsy (as I have a multinodular goitre) and a heap of blood tests as I had been feeling pretty rotten and was sure it was more than just menopause (I'm 54). The biopsy was clear (yay!) but the blood tests showed that I had very low Vitamin D and B12 and high TgAb antibodies - hello Hashimotos
I decided to try the Auto Immune Protocol (AIP) and followed it strictly for seven months. I lost 18 kilos without trying and felt a lot happier in myself generally. The weight loss surprised me as I didn't pay any attention to my fructose intake as my blood sugar levels have always been fine. I've just returned home from the doctor and my recent blood tests were as follows:
TSH (Roche) 1.34 (0.5-5.5) - this is up from 0.96 in 2017
FT4 (Abbott) 11.6 (9.0-19.00)
FT3 (Abbott) 4.2 (2.6-6.0)
TgAb 283 H (<115) - this is down from 355 H in 2017
TPOAb 11 (<35) - this is down from 19 in 2017
rT3 332 (140-540)
MTHFR C677T Mutation Not Detected
MTHFR A1298C Homozygous Mutation Detected
Iron 16 (5-30) - this is down from 19 in 2017 and 22 in 2016
Ferritin 116 (30-500) - this is up from 98 in 2017 and 100 in 2016
Vitamin D 96 (50-250) - this is up from 38 in 2017 (am taking D/K2 drops)
FOLATE >45.0 (>6.0)
Active B12 not tested (23-100) - was 59 in 2017
Total B12 1160 H (200-700) - this is up from 241 in 2017 (am taking sublingual B12 and a B group supplement)
P-Zinc 12.7 (9.0-19.0)
RC Mg 2.39 (1.65-2.65)
My doctor thinks I'm probably going to need Thyroid medication soon but didn't want to prescribe anything today as I'm having another thyroid biopsy tomorrow. He thought everything else looked good but wants me to see a dietitian as I'm struggling to get off the AIP diet as my food sensitivities are going bananas every time I try any reintroductions. I've started losing a heap of hair again and am wondering whether this is related to the increased TSH? Or my Ferritin and/or Iron levels?
Would appreciate any thoughts as it's all a bit complicated for my poor old brain, particularly the MTHFR mutation. My main symptoms are forgetfulness, peripheral neuropathy, food sensitivities, broken sleep and hair loss. I feel way better than last year but am sure there's room for improvement!
I'm not sure whether this has any bearing but I had my hormones measured as well as follows:
FSH 122 (31-153)
LH 61.0 (12.0-75)
Oestradiol <44 (<200)
Progest <0.6 (0.3-2.5)
Testo 0.5 (<1.6)
SHGB 165 H (28-150)
Thanking you lovely knowledgeable people in advance,
HashiHolly
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HashiHolly
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Hi HashiHolly. I am familiar with all of your tests, including MTHFR. Yes, hello Hashimoto's. Darn it, huh? You might be feeling so lousy because you have untreated Hashi's and your thyroid hormones are too low. While your TSH is at what is considered to be an ok level, it's your actual thyroid hormones (TSH is not a thyroid hormone) which are measured in free levels through the FT3 and FT4 test that are both too low and that show that you are hypothyroid. Your hair loss could be from your low thyroid hormones FT3 and FT4 showing hypothyroidism or it could be related to low iron. Your iron storage protein, ferritin, is on the low side for that large lab range.
It is unusual to have to get a second thyroid biopsy. Do you know why you're having one? Did the radiologist miss biopsying something?
Unfortunately your doctor is not understanding thyroid disease or Hashimoto's if he thinks you might need thyroid medication soon. You have passed the point of needing it soon. You need it now because your latest lab results show too low thyroid hormones and Hashimoto's. If left untreated, Hashimoto's and thyroid hormone levels will get worse. The only treatment for Hashimoto's is thyroid medication. Just like any other autoimmune disease, Hashi's cannot be cured, but can be controlled with the right treatment. It's a life long disease once you have it.
There are two thyroid hormones, T3 and T4, and they both work together. TSH is not a thyroid hormone but comes from the pituitary and your number helps to indicate how fast or slow your thyroid is working. T3 is the active hormone of the two thyroid hormones and T4 is converted into T3.
Your FT4 is much too low at 11.9, which is not even half range. Anything below half range will cause hypo symptoms. Anything above 3/4 range will cause symptoms that lean towards hyper. According to your lab range for FT4, the target number where most people have the least symptoms is an FT4 over 14, but the closer it gets to 3/4 range (16.5), you might find that you have undesirable symptoms. Your FT4 should be at least 14. To get it where it should be so that you'll have the least amount of symptoms, you will need to take supplemental T4 thyroid hormone.
Your FT3, the active hormone, is also too low at 4.2. Many people feel their best when their FT3 is close to 3/4 range, or 5.15. If it goes over that number, you may experience undesirable hyper thyroid-like symptoms. To get your FT3 up, by taking supplemental T4 thyroid hormone, your FT3 will increase. You do not have a conversion of T4 into T3 problem, fortunately.
Because Hashimoto's is an autoimmune disease, a gluten free diet is recommended, as well as dairy and soy free, too. If you've tried the AIP diet and have tried to reintroduce some foods but have problems, then you probably shouldn't be eating the foods that cause the problems. You are reacting negatively to them.
Having the MTHFR gene that you do means that your body cannot process synthetic folate, commonly known as folic acid. Taking any foods that are fortified with folic acid or taking folic acid supplements can make you very sick because they are toxic to someone with MTHFR. The form of folate that you should take is called methylfolate. With MTHFR, you will also likely have a problem processing synthetic B12, so you should only take methylB12 or hydroxyB12 if you can find it. Oral methylB12 is readily available. It is also available in injectable form, as is hydroxyB12. When your active B12 was tested in 2017 and it came back as low, this was probably due to MTHFR gene mutation and not taking the right kind of B12. Your total B12 is can be high even if taking the toxic form of B12 for someone with MTHFR.
Your Vitamin D is much too low. It should be up near the top of the range, near 250.
As for your hormone tests, there are optimal days of the month to get these tests done. Without knowing which day of the month were these tests were done and the corresponding levels for which part of your cycle the tests were taken, no conclusion can be made from your test results. I see that you are menopausal. Do you still have a regular period? Can you post the day of your cycle and the corresponding ranges for each test that will go with the phase of your cycle?
Thank you so much for such a detailed response! I've been feeling somewhat overwhelmed with test results and treatment options today but I don't feel as though anyone has explained things as clearly to me as you have in your post and I thank you again for your generosity in taking the time to write such a detailed reply.
I'm seeing a Naturopath on Friday so will discuss my Iron and Ferritin levels with her and see what she recommends to improve those levels - I'll do anything to stop the hair loss! I've been eating plenty of chicken livers and meat so obviously I'm not absorbing nutrients as well as I should be. I'll also check that I'm taking the right form/amount of Vitamin D and B12.
The Thyroid surgeon I saw today decided against doing a second biopsy as she was happy with her ultrasound exam. The left lobe of my thyroid has three large nodules and is extending down behind my collarbone and she is recommending a partial Thyroidectomy before Christmas. It's not urgent as she was confident there is no sign of cancer at present but she feels that it will need to happen one of these days and the surgery will only get trickier with time. My consultation with her was a second opinion - the previous surgeon wanted me to have my whole thyroid removed two years ago on the basis that my mother had hers removed due to cancer in her 80s. Given I was only 52 at the time his reasoning seemed a little extreme and seems somewhat aggressive in light of today's advice.
As for diet I've been gluten, dairy and soy free for more than six months and eating AIP. I've struggled with food sensitivities for years and developed a severe salicylate intolerance after I had my daughter at 42 and with the AIP diet I now seem to be reacting to glutamate and/or histamine so eating is becoming a fraught exercise. I only tried reintroducing white rice, green beans and peas, potatoes and egg yolks and I'm now covered in rashes which I haven't ever experienced before! Hopefully the dietitian I'm seeing on Tuesday will be able to help because I feel as though I'm living on meat, pumpkin and lettuce - and not being able to eat any leftovers is exhausting!
As for the menopause I probably wasn't very clear as to where I'm at - I haven't had a period for two years now and the references I posted were relevant for post menopausal women. I'm still having hot flushes daily so I feel as though I'm still living it whereas I guess I'm truly menopausal now! I find it hilarious that no one wants to give may any thyroid medication But I've been offered Melatonin and HRT on more than one occasion!
I have one more question - and that is should I go back to my GP to discuss my T3 and T4 levels or should I make a decision regarding the surgery first? I understand that everyone here believes that the accepted ranges for thyroid hormones are too low and that people feel better when their levels are in the upper ranges. I'm going to have to get a bit tougher or find a more enlightened doctor because I've now seen two doctors and two surgeons who all think my thyroid hormones are fine. I don't feel fine but I also don't feel as sick as some people on this forum describe feeling. But then I don't smoke, drink or eat any processed foods so maybe that contributes to better overall health and well being. The brain fog, forgetfulness, peripheral neuropathy and hair loss has been going on for so long now that I almost take it for granted - but it would be great to kick those symptoms for good or at least reduce their severity. Oh well - onwards and upwards! Thanks again for all your advice - hope you're having a wonderful day wherever you are
MTHFR gene governs the process by which you methylate folic acid. The genetic variant you have can decrease the efficiency of that process. It doesn't completely stop it.
I haven't looked at it for a while but this site seems to give a reasonably balanced view on the significance of MTHFR variants.
Quite a large number of the population have variants in this gene - particularly C677T (which you don't) and A1298C
homozygous means you have two copies so makes a reduction in efficiency more likely but I am not sure what the significance is of A1298C.
This article is about a study that looked at the this variant amongst others and concluded that although A1298C is involved in methylation being homozygous actually makes part of the process (at least) more efficient.
In conclusion, our study showed that the A1298C MTHFR mutation is also common in the Jewish Israeli population. In contrast to the C677T MTHFR mutation, we found no evidence to suggest an association between this A1298C MTHFR mutation and elevated plasma total homocysteine concentrations. However, we did demonstrate that the A1298C mutation affects homocysteine metabolism because subjects with the 677CC/1298CC genotype had significantly lower total homocysteine concentrations.
PS Any affect on B12 would be secondary to the effects on folate - if the genetic combination you have makes your use of folate more efficient then it isn't going to have an impact on how effectively you use B12
Apologies but I'm going to have to take your kind words to my Naturopath to decipher - it's all a bit technical for me! My homocysteine is raised and my doctor would like to see it come down, hopefully with diet modifications so am seeing a dietitian on Tuesday. Thank you so much for replying to my post - I really appreciate it
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Darn it, huh? You might be feeling so lousy because you have untreated Hashi's and your thyroid hormones are too low. While your TSH is at what is considered to be an ok level, it's your actual thyroid hormones (TSH is not a thyroid hormone) which are measured in free levels through the FT3 and FT4 test that are both too low and that show that you are hypothyroid. Your hair loss could be from your low thyroid hormones FT3 and FT4 showing hypothyroidism or it could be related to low iron. Your iron storage protein, ferritin, is on the low side for that large lab range. 
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