Hi all, I am beginning to feel very unwell despite being on enough Levo. I also have elevated antibodies to TPO and TG. My dose is 100mcg but I want to increase it. The highest dose I have ever been on is 200mcg Levo and I was diagnosed with underactive thyroid in 2010 though didn't receive treatment for it until 2014 because my thyroid bloods were always in range before that.
List of symptoms:
Going for days without going to the toilet (stools)
Feeling cold
Sweat pouring off me - worse when going from a warm place to a much colder one, as if my body is taking longer than usual to cool down and adjust to the cooler temperature.
Shivering
Muscle aches and pains
Muscle weakness and cramps
Nails breaking more easily
Painful and heavy periods, was told by a GP the pain would stop once I reach my mid to late twenties, I am now in my mid thirties
Acne on face and back
Fluctuating weight - never overweight though, have always been underweight when I barely ate anything or healthy weight
Eye dryness and irritation
Tiredness
Headaches
Pain behind eyes
Dizziness
Pounding feeling and sound of blood/pulse in my head (possible blood rushes?) Seems to happen after I get up from sitting down or walking outside
Feelings of irritability/lowness
Breathlessness
Puffy and red eyes and eye area
Black circles under eyes
Ears ringing with feelings of fullness and deafness
Apologies if none of my symptoms make sense, I feel pretty daft for coming here because of how strange I have been feeling but any light that can be shed on why I am like this I would be very grateful for.
Thank you
TSH 3.8 (0.2 - 4.2)
FREE T4 17.4 (12 - 22)
FREE T3 4.1 (3.1 - 6.8)
THYROID PEROXIDASE ANTIBODY 557 (0 -34)
THYROGLOBULIN ANTIBODY 384.3 (0 - 115)
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Blue_topaz85
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For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with high Thyroid antibodies. This is autoimmune thyroid disease also called Hashimoto's
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's.
A lot of your symptoms are likely due to low vitamins
Food intolerances are very common too, especially gluten.
Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise
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 and vitamin testing
Thank you, so far as I know my levels of vit D, B12, folate and iron are ok but can post these if need be. I supplement too but haven't noticed any difference.
How do I go about getting the coeliac test done? I am meant to be eating gluten for the test and for a number of weeks I believe, but I don't eat gluten every single day.
All thyroid blood tests are done as early as possible in morning and fasting, I do not take Levothyroxine dose in the 24 hours prior to test and I take immediately after blood draw.
The last time ferritin, folate and vit B12 were checked was December 2018. Iron is topped up whenever it falls below 30. Folate I take folic acid 5mg. Vitamin B12 I take injections quarterly. Vitamin D was checked November 2018 and I take 3000iu vitamin D oral spray for that. Thanks
Suggest you read many of SeasideSusie excellent detailed vitamin supplements replies
On B12 injections recommended on here that Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.
B vitamins best taken in the morning after breakfast
Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two). Or Jarrow B-right
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
Thanks for this, I have never taken a B complex but perhaps need to if I am taking folic acid and receiving B12 injections as well as the possibility I am low in the other B vitamins too.
Thanks. I have been taking vitamin D 3000iu (Better You) since September 2017. I was first taking it in January 2014 until May 2015 but my level didn't rise that much, even in the summer. I then bought a new spray (same brand) and took it from September 2017 onwards.
Hi. I live in Bristol, and I've seen 2 endo's at Southmead. One was nice, but really not very clued up on the subtleties of the thyroid. The second was supposed to know all about the thyroid, but was terribly condescending and not willing to listen to me. Unfortunately, at the time I didn't know much about the thyroid so I wasn't in a good position to argue. NOW, I'm much more clued up about thyroid issues. I'm supplementing to get my vitamins to the correct levels, and I've recently gone gluten free due to having Hashimoto's. I'm hoping my GP is going to refer me to an endo at Weston (who has been recommended to me). Could you PM me to tell me who you've seen at Weston, and what you think of them? Don't put names or opinions on the open forum, as it's against forum rules. Many thanks, Nick.
That folate result isn't very good for someone supplementing. You might find you do better on methylfolate than folic acid as some people can't convert folic acid to its active form and find that it actually makes them less able to produce and use folate. Did you get a full iron panel done as that ferritin is high enough to cause problems, esp if you are female? Looks as though you need in increase in vit D also - an oil emulsion version or a mouth spray might be better absorbed than capsules of tablets. Don't forget to take magnesium and vit K2 with your vit D to make sure calcium ends up in bones not arteries.
Horrible symptoms. I would really say do not rely on drugs to solve the problem. You are being given (as all of us with these problems have been) huge signals that things have to change. really look at what you are consuming. Really increase nutrient levels with high quality, high dose supplements. Drink lots of properly filtered clean water. Drink healthy home made juices like carrot, ginger, turmeric, greens etc. eating big salads with greens, raw beetroot grated etc, plus taking magnesium in doses that will help solve the constipation (and drinking lots of water). This is important because the constipation holds toxins in your body, recycling them. There are not short cuts and a prescription will not help that much without changes. We can (and do) think we are already doing a lot. The truth is that if we still have real issues we need to o more. I know from experience that when we feel rubbish it is very hard to do these things.but they do help. There is a great youtube video called Superjuice me! by Jason Vale. Very encouraging!
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Stopping levothyroxine
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