I’ve been ill for 14 years. It started gradually with only fatigue and progressed to full spectrum of symptoms like pains, dizziness, shaking, tremors, weakness, tachycardia, weight gain, insomnia, feeling cold all the time, numbness and more. Finally, in November 2018 the neurologist diagnosed me with B12 deficiency (145) and referred to Gastro, which found that I have Pernicious Anaemia. I started SI hydroxocobalamine daily along with iron, folate and multivitamin supplements. After three month I did not feel much better overall and on top of that got horrible hot flashes and night sweats. My GP did the TSH an FT4 and it came back Subclinical hypothyroid. TSH 9.8 and FT4 normal. I was put on 25 Levo. The hot flashes went after two weeks but rest of the symptoms remains. I asked my GP to increase my Levo, but my TSH was ‘normal’ (2.8) and she refused. Than I’ve noticed on the labs from the Gastro( January) that mine FT3 was 3.6 range 3.9-6.8 and ordered a bunch of test privately.
Latest labs
TSH 2,87 mu/l 0.27-4.20
FT4 14.03 pmol/l 11.60-21.90
TT3 1.71 nmol/l 1.23-3.08
Anti-TPO >600 ku/l <34
Anti-TG 297 iu/ml <115
Total B12 >1500
Active B12 >150pmol/l >60
Ferritine 126 mcg/l 15-150
Folate >45 nmol/l 10-42
Vit D 86 50-150
I’ve ordered extra FT3 and Rt3 , awaiting results next week. I upped Levo to 50 and booked an appointment with the Endocrinologist in June. This is the second Endo, I ran away screaming from the first one as he was only interested in mine labs, wanted to take me of the Levo all together and would treat me if mine TSH > 10.
I feel very ill and desperate. I don’t work and cannot drive because of mine symptoms. I can only walk for 15 minutes before my legs give out. I was a very active and athletic before and it is killing me just sitting at home doing nothing. I am a Christian and the prayer is the only thing that is keeping me sane.
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olga67
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Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Bloods should be retested 6-8 weeks after each dose increase
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
NHS guidelines on Levothyroxine including that most patients need somewhere between 100mcg and 200mcg Levothyroxine. Also what foods to avoid (note recommended to avoid calcium rich foods at least four hours away from Levo)
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH under one) and FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.
This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.
Thanks for your reply, SlowDragon. The multivit is a good point , I did not think of that.
Further, I have already upped Levo to 50 myself a week ago.( I have a source in Spain). I am diary and gluten free for a month now and I never consumed soy.
I did not do endoscopy this time , even though the Gastro wanted to. I had two in the past, they did find chronic gastritis then prescribed me antibiotics an double dose of PPI’s for life, never checked my B12 status.
Luckily, I stopped the PPI after a couple of month.
Hi Olga, I have been hypo for years and looking at your labs, you are definitely hypo. 25 mg of levo is a pathetically low dose. I take natural dessicated thyroid such as Armour or NP. ( I am actually self treating with over the counter Thirod S, as they don’t have NDT in the Caribbean where I live). There is a very good website, stopthethyroidmadness.com
and there are books by the owner of the website. They can tell you how to interpret your labs. It’s good you ordered your rt3 labs, as you very likely have issues since you are having problems with low iron. There is also a yahoo group that is very helpful. I know many if the mods have had low iron and problems raising, so they may be able to help with that. They will want to see all 4 iron lab results. Also, the sttm books and website will tell all labs you need and can give you a world of information.
Icelandlady91, thanks for your concern and information, I’ll definitely look into it.
One thing, I did not have issues with the iron. My Gastro ran the full Iron panel and it was fine. I am supplementing folate and iron to support B12 . Frequent B12 injections can deplete iron and folate storages quickly. (info from PA forum).
It sounds like you had pernicious anaemia for a long time before you were diagnosed. It's going to take time for your body to heal. Your body is probably having to rebalance and it's bound to affect how you feel. You really need fT4, FT3 and TSH tested all at once in the same blood tests as it's best to read all the results together. It's a good idea like Slowdragon says to rule out coeliac disease. If you've got autoimmune conditions and difficulties absorbing vitamins then it could affect thyroid function and how you absorb levothyroxine too so you need to get any gut problems sorted out.
Have you had tests for kidney and liver function? Just worth checking everything since you are still symptomatic and have TPO and Tg antibodies. Don't give up, it sounds like you've begun to unravel your health problems, but you need to persist to follow it through. Just because the doctors have found pernicious anaemia it doesn't mean they've got to the bottom of everything because autoimmune conditions often coexist so there could be more investigations that need doing. Just keep going back to the doctor and keep asking for further blood tests and other investigations. If you haven't yet seen a neurologist, you could ask for a referral. Do you think you might have some neuropathies as a result of untreated vitamin B12 deficiency? Best forum to ask is the Healthunlocked pernicious anaemia forum.
Nanaedake, you are right by saying that I am at the point when things about my condition are starting to come to the light. I do try to stay on top of things, while fighting docs and being ill is not an easy task.
The FT3 and Rt3 are from the same blood sample as Antibodies, TSH FT4 and T3. The lab kept my blood in the fridge and I just ordered additional tests from the same draw.
My Gastro ran extended bloodwork, urine and stool and did an stomach US. According to him I do not have parasites, HIV, hepatitis, coeliac and my liver and kidneys are fine.
Are there other tests to rule those things out?
I’ve been to Neuro, he diagnosed me B12 deficiency, he also did an MRI which was fine. I’ve been to numerous Nero’s in the past years, none could find anything, it was all in ‘my head’. Only the last one checked my B12 status.
Thanks all for your support, I have long road to recovery ahead of me and I appreciate some encouragement.
Many of us with Hashimoto's test negative for coeliac, but we can still be gluten intolerant
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
I agree with Slowdragon that even if coeliac disease is ruled out you would likely benefit from a gluten free diet. Worth trying for 6 months at least. Don't buy manufactured gluten free food, just eat freshly prepared veg, fruit, fish a little meat (if you're not vegetarian) and dairy products. You need enough good fats for optimal health. I use olive oil and avocado oil on food and for cooking.
Thanks a lot guys for the advice. I am not a vegetarian, always been a meat eater. The B12 deficiency was a real surprise for me. But I am eating manufactured gluten free bread. I do not eat any pasta or pizza so, no problem there, I can switch to salads instead of sandwiches for lunch. What about breakfast? I can’t eat eggs an really enjoy pate sandwich with my coffee. Any ideas?
Another question. As I understand , my final Levo dosage would be somewhere 100-150.
I increased the dosage to 50 after being three weeks on 25 as the cold shivers and night sweats started to return. Should I wait 6 weeks before increasing to 75 or go by my symptoms?
Have you considered switching to NDT (Armour or other type)? Some people do not tolerate Levo well. Also, you are mentioning that you can't eat eggs - are you allergic or there are other reasons?
Hi Olissima, thanks for replying. I am considering anything at this point however, Levo is the only med I have access to at the moment. I am from Holland and I need a prescription from the Endo to get other Thyroid meds. We do not have private clinics or doctors over here. The only way to see a specialist is through a GP referral and then these endless waiting lists at the hospital, it is a nightmare. That is why many Dutch patients divert to Belgium or Germany out of desperation, but I am too weak at this moment to do that. Thank God we have private online labs now. I have an appointment with Endo in June, but I am nervous, as the outcome is unpredictable. In general the docs here are just as arrogant and pompous as in the UK. I also want to get a proper diagnosis before I start to experiment to much on my own.
As for eggs, I am not allergic, I get stomach ache and heavy feeling if I eat them.
I would wait for the blood test to increase levothyroxine. Symptoms are a tricky guide as they can be related to other things. They give an indication that you need a blood test to check levels though. wait 6 weeks after a dose change to retest unless you are suddenly very, very symptomatic and have hashimotos thyroiditis where levels can fluctuate very suddenly. Others with Hashimotos will have better advice on this aspect than me. I had a partial thyroidectomy, hence hypothyroid now.
Instead of bread, I eat some carbohydrate vegetables such as sweet potato. I take the evenings left-overs for lunch the next day. Rice is easy to accompany fish and vegetables and can easily be taken for lunch. It's not that you shouldn't eat gluten free bread but it's expensive and when I look at the list of ingredients used it's quite horrible. If you read the label next time you can make up your own mind.
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