Hi everyone I haven’t posted in a while and hope you are all coping
I saw my GP this week as I had unintentionally lost a lot of weight and muscle.
My Levothyroxine has already been reduced because they thought I had tipped over into hyperthyroidism.
As I explained after 30 odd years of being hypothyroid I knew my body and that didn’t make sense. I have no energy at all, I can sleep around the clock and my hair is falling out.
I’ve lost 4 stone this year (clothes size 16-18 to size 8). She did not have an answer but felt my neck and found a lump in/by my thyroid and the lymph glands were swollen. She asked me to give her until Wednesday to look at my records and decide what to do as I have a complicated medical history.
As I have previously had breast cancer (same side) and lymph nodes were removed under my arm I guess she was at least prepared to look into it.
Has anyone had this experience and had lumps on thyroid gland?
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irishacres
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I have had lumps and some tenderness. They sent me for an ultrasound and then an MRI. Apparently a non worrying adenoma and sign of thyroiditis.
Is your hypothyroidism autoimmune? Have you had your TPO and TgAb tested?
The reason I ask is I had the weight loss over the summer and was a bit over range on my bloods, it didn’t last long, reduced my dose for 6 weeks, then brought it back up. It’s the Hashi’s causing thyroiditis, through life I’ve had swings of being a bit hyper for a few months and then a hypo crash.
Hair loss, mine stopped dropping when I got my folate, ferritin D and B vitamins at the top of the ranges. Has your doc checked those for you? Having those low (common with Hashi’s) makes you feel dreadful and your T4 doesn’t work properly either.
Hugs to you, I know it’s awful. Be firm with that GP of yours, don’t let them get away with telling you it’s not thyroid, it is, but it’s whole body related. They need to treat all of you 🌱🤗
Yes my hypothyroidism is auto-immune I have some really strange other ones. If it’s rare I’ve got it 🤣. I don’t know what the blood tests you mentioned are. What are they for?
My folate levels were very low and my B12 high But I’ve been taking folic acid which has brought folate into normal and I actually feel really good apart from always being cold and saggy skin from weight loss 🙄 I take vitamin D tablets and they did a full blood panel (apart from thyroid which I have done at hospital for Endo to control)
GP was talking about CT for abdomen and intestines , the antibody blood test for high B12 and talking to Endo as a start. I think you could be right and it’s thyroid related
GP said she was concerned about thyroid lump but because I’m complicated she wanted more time to look at my history and decide where to refer me and which tests were needed.
My ferritin is weird it’s always been low, I get an iron infusion which makes it high but within 6 months it’s back to 12 and I go for another infusion This has been the cycle for years but after changing GP because I moved she only does 3 monthly bloods and ferritin is low then next time has gone up! Which I’ve never had before. don’t understand that
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.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to 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 may slowly lower TPO antibodies
While still eating high gluten diet 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
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Thank you for your very useful information. 🤗 I will look them up. I have never been tested for this. Although before the 4 stone weight loss I had IBS for a number of years. This is no longer a problem. No bloating, no cramps no constipation, no problem. Which is weird. I will see what the blood test comes up with. But I no longer have any pain in my stomach.
I take vitamin D (prescribed) my folate levels were low but since taking folic acid my levels are normal. B12 is high (1476) but I have B12 injections every 3 months. Dr says it’s ok but she wants an antibody blood test done before they consider tablets. Ferritin is a sore point. I don’t believe the results as they are going from 17 to 24 then up then down. For years with my previous Dr I would have an iron infusion and level would be 260 but following month 60 then down every month until I got to 12 then I would have another infusion and the pattern would repeat. Since moving and having new doctor this has changed(or so they tell me).
For good conversion of Ft4 to Ft3 we need OPTIMAL vitamin levels
Vitamin D at least over 80nmol
Ferritin at least over 70
As you have B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose
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
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
irishacres, your weight loss and low ferritin made me think about coeliac disease. There is no family history for me of anyone being coeliac. Once on treatment for hypo ( I also had raised TPO) and after reading advice on here I went gluten free and it made a big difference. My ferritin levels improved too. I then also tried lactose free and that helped.
Because of my gut issues from Hashis I suggested coeliac disease to my daughter when my one year old grand daughter became unwell at 1 year old and lost weight. She was then diagnosed coeliac and is very sensitive. She is now very healthy.
I hope going gluten free makes a difference for you and helps you on the way to better health.
Thank you for your advice. I’ve never been tested but will ask for a blood test to be done. I hope your little Grand Daughter is ok poor little thing having to deal with that for, presumably, the rest of her life. Hugs for her 🤗
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