I have Hashimotos, B12 Def, lichen sclerosis, GERD, Vit D Def, Diverticulitis and a ANA 1:80 Speckled pattern and had one appointment so far with a rheumatologist. I’m on the emergency list for a full hip replacement, which I’ll hopefully have done in Approx 4 months time.
When the Pandemic hit, I couldn’t get my NDT from Thailand and had to find an alternative, as I didn’t do well on Levothyroxine, (8-10years ago and they Dr couldn’t stanbalize my Thyroid) as I had a conversion issue. I tried adding T3 under an Endo referral but had constant headaches, so decided to go down the natural work and my thyroid was stable for 6 years ( had 6 weekly blood test and GP was aware of my new medication).
Over the past 6 months my bloods have gone haywire, thyroid has been out of sink, have been in constant severe pain, (for 3 months) put on morphine and Prednisolone and spoke to Rheumy Friday over the phone, who wants me to wean down the speed to 10mg per day(I’m in 30mg). He’s requested blood tests, including postassium as it’s high , auto antibody tests, kidney function tests as my EGFR was 54 in December but then my TSH was 47 and underermedicated. Luckily I’ve managed to source my thyroid NDT from Thailand again and started to taking it this morning. He’s also requested a chest X-ray. As you can see my bloods are all over the place. I’ve also got an issue with malabsorption of B12 and don’t seem to be absorbing that either. I’ve been deficient for approximately 6 - years, treated for approx 3 every 3 monthly injections. The first year I self injected Hydroxycobalmin, taking 5mg Folic acid and didn’t really feel it was improving my neurological symptoms, so tapered off to SI monthly. I didn’t ask for my B12 to be tested last month but was shocked when my level was only 250 (180-685) I thought it would be at least over a thousand? I’ve always had active T Cell Lumphocytes and at the moment they’re reactive. Drs are all saying I must have had a virus, when I know I haven’t. My lymph nodes up in my neck come up when I’m feeling like I’m having a flare. Can anyone relate to any of this and also does anyone know why my bloods have suddenly gone haywire? I’ve never been borderline Diabetic either. Blood tests in comments box.
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I had a positive Gastric parietal Abs test in 2013 and neg IF Abs test. I had 3 failed endoscopes, sedation didn’t work, I woke up fighting and pulling score camera out. Never given a diagnosis for Vit B12, just told life long injections. I’m worried that I’m not absorbing my B12 through my cells now, very rare I know but recently I’ve been on different medications for pain, (pill form) and none of them have been effective. E.g Naproxen, Amitryptaline, Duloxitine, Tramadol, Diazapan etc morphine liquid worked (Oramorph) but I’ve recently gone over to Ocycodone and it’s not as effective. I’m On Vit D as deficient back in 2013 and hoping that my NDT I started taking today will work and start to stabilise my upset Thyroid. ☹️
Folate will be low because of now being hypothyroid
Rather than just taking folic acid
As you have B12 injections it’s might be good to also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
This can help keep all B vitamins in balance and will help improve B12 levels too
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B is another option that contain folate, but is large 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
You are amazing! I’ve been researching the MTHFR gene only yesterday and today and scratching my head. How do I go about testing for this, any idea please? I did take a B Complex last year 4 months on and 4 months off but I’ll buy my self some more. I was told to make sure no more than 10mg of Vit B6 in it as B6 can be toxic. I’ll stop thenfllic acid once it arrives and see if that helps. Thank you
I had a homocysteine level of 15 back in 2014 and haven’t had it tested since. I think I need to get it tested along with the MTHFR gene test. My TPO antibodies were more than 500 in 2013 and 2 weeks ago were 378.08
1 tablet of Calcichew prescribed by the GP, it’s Vit D with calcium. I haven’t had it retested since 2013. I stopped taking it in 2018 when I started B12 injections and took Vit D3 K2. After speaking to Rheumy he wants me to start again in the Calcichew and not take vit D3 K2, possibly as my potassium is too high or maybe to get an accurate blood test of potassium.
I’m not on a strict gluten diet but try and eat may fresh produce. I don’t eat a lot of carbohydrates potatoes, bread, cakes etc as they play havoc with my Gerd and Diverticulitis. Sugar is my love but my worse enemy and I’m going to cut it down. I also smoke which is another issue and no that this needs addressing too.
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.
Ok thank you. I’ll check thyroid in 4-6 weeks to see where I am with it. No doubt drs will do it before then. to give me an idea, when I get all the other anti- body tests done that the Rheumy has requested. I’ll keep you posted.
No. I decided to learn about the thyroid, read lab reports and be my own advocate. I was even told at the drs to reduce my thyroxine, which made me poorly and 6 weeks later i was even more hypothyroid. Saw a different dr and he said I should have been told to increase my thyroid meds. This is when I’d had enough and knew I needed to take back some control. They’re very supportive now, always check my TSH, T3 and T4 and I can have blood tests 6 weekly. Once I got it stable for a few years I checked it 3 monthly but then the Pandemic hit and I couldn’t get my NDT. Some of the symptoms I’ve had for years, like choking on soft foods, hurting and limping after walking, the severity has increased gradually over 5-6 years, some of the issues are hip related, some no doubt undiagnosed disorders, some neurological (I’ve had 2 spine operations) also B12 Def and let too long without treatment and some being so hypothyroid for 6 months, hasn’t helped at all. I was suspected 8 years ago of having a connective tissue disease but ran a few blood tests and said all was well.
No but being stable for 6 months and then feeling at rock bottom and having to have morphine just to get through the day without constant pain, difficult to even shower/personal hygiene etc have to use 2 walking sticks to walk 100 metres or so to be absolutely shattered and need rest, just doesn’t seem to add up. Maybe it is just the thyroid but like you said, 6 months isn’t long and I wouldn’t of thought I’d feel like this.
Obvs not a Dr but sounds like you need a lot more B12 to me! I SI every other day and neuro symptoms slowly easing after 9 months - particularly legs/feet/hands. B12 impacts thyroid so I would start with SI. Lichen sclerosis should be treated immediately with steroid cream until it’s gone, you may also need oestrogen pessarries. Mine’s gone but I use sudocrem to prevent dryness. I am hoping the B12 will help as my skin dryness has improved massively. Good luck it’s so hard when you’re exhausted by your symptoms to fight for what you need.
Thank you Clare. The LS is being tested with Dermovate ointment as and when it starts to itch and I’ve started to SI every other day with my B12. I’ve ordered a High strength Complex B Vit with Folate to see if that brings my Folate levels up. I would of been dead set against them testing my B12 if they’d ask, as I know that we have, or supposed to have a lot of B12 floating around around our bodies after injections (thought level would be at least over 1000) but was so shocked at the result.
I read somewhere that there is huge variation individually in recycling of B12 from c30% to 90%. I guess we’re at the low end of the spectrum and our bodies are kicking most of it out😩
Exactly what I’m thinking. Not sure whether my kidneys are functioning the way they should and whether I’m weeing most of it out too. Hopefully GP or new Rheumy will find out, so trying to keep positive.
I don't know about the vitamins but think you might do better with more thyroid meds. Your tsh could be lower and your T3 and t4 higher. I seem to need my T3 top of range to reduce pain (taking 5mcg extra after a walk works far better than taking naproxen or zapain).
I’ve started back on my original NDT in the last couple days, that kept me well for 6 years. I take 3 1/2 grains, I’ll test my thyroid in 4-6 weeks and hopefully it’s will be back in range. I can add a little more if need be to get it to the upper end of range. I just couldn’t get it, when the pandemic hit, like so many others.
I had lichen planus in my mouth for several years, then found it was an allergy to yogurt! You may want to try a diet elimination for your lichen sclerosis. Also have very high ANA titer results which no one can explain...
Many of your issues come within the remit if your rheumatologist. Although Hba1c levels can be affected by unmedicated or undermedicated hypothyroidism, your positive parietal cell antibodies, possibly indicatng ctd, will be causing issues such as GERD, malabsorption, B12 deficiency and possibly PA. Swollen lymph nodes and lymphocyte abnormalities can certainly be caused by a virus, of which you may be unaware. Your rheumy will no doubt be pursuing investigations, particularly in the light of your forthcoming operation. Hopefully you will get some helpful solutions then.
Thank you Partner20. I think your comment is spot on and I’m hoping that most will be sorted out once my thyroid has settled down and hip operation is out the way. It would be good to know where B12 is PA, Chronic Gastric Atrophy or just malabsorbtian. The T Cell lymphocytes has been active for Approx 8 years and rarely do I have a blood test with them not over range. Drs thought it was looking like CLL but don’t now but they don’t know to be fair, why they’re raised.
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Blood test results - not happy!
Annual NHS Blood Test
VITAMIN SUPPLEMENTS AND BLOOD TESTING
Advice on blood tests pls
