I've just joined today and was really hoping for some wisdom/insight/support. I've been really unwell for about a year now, initially I had weight loss (2 stone in 3 months) then weight gain, severe fatigue, B12 deficiency, hair loss, digestive issues. The doctors tested me for just about everything - stomach ulcer, gallstones and crohns - all negative.
They finally checked my thyroid in November which was "normal" (I didn't get any details which I should have) but I tested positive for Thyroid Antibodies. They were sitting at just over 1,500.
My aunt and gran on my mums side both suffer from hypothyroidism so I've been battling with doctors since then to keep testing and come up with a solution. I have found a nice doctor now that is convinced that all my symptoms and issues have been related to the antibodies and is testing again to see what level they are at. My TSH level last week was 3.7 (I think lab range was 0.5 - 5). Even though she thinks the antibodies are to blame, she said I might not receive any treatment and that they will just wait and see if it gets worse?!
I've really struggled this past year. I've just turned 29 but feel 109 and it's really impacting on all aspects of my life.
Please can anyone relate any stories or offer any advise? Should I just wait and see if it gets worse?
Sorry for babbling so much, I'm just quite desperate and at the end of my tether!
Thank you all!
Written by
pennyrose
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I tested positive for antibodies and was high end of TSH range 5 years ago. My GP asked if I was fighting any infections which I wasn't. She told me if you go looking for things you will always find something so we will just see how things go. That was 5 years ago. After monitoring for 3 years, being put on thyroxin only to be taken off one year ago by a useless Endo I have self referred myself to another in April who is horrified at my treatment. He can't believe I have been left so long without thorough investigation. I have had lots of bloods done I am not sure of the results but I still have these antibodies and next week I am having more bloods done and a scan on my thyroid. If you feel unwell and these antibodies are still present ask to be referred to a good Endo. Don't hang around.
....there is a book that may be a good read for you - Hope for Hashimotos - laying down a protocol. Also full of explanations which may well speed up the understanding of this mystifying condition.
I notice you have had several tests for gut issues - so if you have problems it is important to heal the gut to optimise your overall health. drmyhill.co.uk lots of good information for free as she is so booked up so puts so much information on her website so we can work lots out for ourselves.....
I am a Hashi's/Crohns person btw......but feeling good !
Thank you both so much! Being positive for thyroid antibodies - is this always Hashi's? My thyroid is swollen so the doc has ordered a scan of it (throat has been sore but not painful if that makes sense) for a while. It seems that the internet know's much more than our doctors...!
Chickens - are you suffering at the moment?
You mention that you have B12 deficiency, are you having regular injections for this? Some people need them more frequently than others. It also comes hand in hand with other vitamin and mineral deficiencies, like folate, vitamin D and iron (ferritin). Were you tested for these? Also, were you tested for Coeliac disease? Try and get your previous lab results - if you had thyroid function tests done I think these usually include TSH, free T4, free T3 and thyroid antibodies. It's worth posting your lab results on this site, lots of people willing to help you interpret them.
You have read my medical notes! My Doc told me that my iron and folate levels are at the lower end of normal and have dropped significantly since December. I had my last B12 in December so need to get this arranged again with the Dr. They tested for Coeliac when I had initial symptoms and came back normal. Can the vitamin deficiencies be caused by thyroid? I'm trying to do as much research as possible but everyone's help has been invaluable.
The only results are:
TSH – 3.7
Free T4 – 13
B12 – 430
Feritin – 32
Folate – 3.5
I’m sorry, the receptionist didn’t have the range!
I'm no expert on hypothyroidism (I'm hyper/Graves), but it looks to me like your thyroid function is tending towards hypo (Hashi's). Perhaps someone else can comment on these results?
I do have a B12 deficiency as well, and I can tell you that you've gone way too long without a shot. The standard in the UK is 3 monthly, but an enormous number of sufferers need them more frequently than this. I can also tell you that your body can't do anything much with the B12 when you get a shot if your folate is too low, and although you haven't given ranges yours looks way too low!
As a starting point, you need to get back to the GP and get them to prescribe you 5mg folic acid (this is stronger than what you can buy over the counter). You need to take this every day to get your folate levels up, alongside your B12 shots. Don't take folate without getting your regular shots!
On the day of your injection, take the folate about an hour before so it can help the B12 work. If you are having neuro symptoms (numbness, pins and needles, fogginess etc) I would actually see if your GP will do the loading dose again, since you've gone so long in between shots. The BNF guidelines state that if you have neuro symptoms you are allowed a B12 jab every other day until no further improvement, and then 2 monthly thereafter. Very few doctors read this paragraph, I pointed it out to mine and he still wouldn't give me more shots. However you could use it as ammunition to get another loading dose.
Many people supplement in between jabs to keep themselves going, a good balanced vitamin B-complex is worthwhile, as well as sub-lingual lozenges and sprays.
I would recommend you go over to the healthunlocked community for Pernicious Anaemia, loads of advice there. Also the Pernicious Anaemia Society website is great, and the website B12d.org. Many other links I'm sure.
Your ferritin is a bit low, you could try something like Spatone to get this up (available from Boots). Other supplements available but that's the one I've used. Discuss with your GP in case they want to prescribe something.
Otherwise, eat lots of potassium rich foods as this can drop with B12 treatment, and try and get your vitamin D tested.
Keep a journal of symptoms so you know what's working and what isn't. I'm quite new to my B12 deficiency but this is what I am doing. I also tested negative for Coeliac disease, but the test isn't totally reliable so I'm keeping an eye on my gastric symptoms.
Welcome to the minefield!
• in reply to
Meant to also say that in Pernicious Anaemia gastric symptoms are often associated with low stomach acid, but this will be misdiagnosed by many GP's as high stomach acid. You then get prescribed antacids which actually makes the problem worse! If gastric symptoms are what bother you the most, it might be worth seeking a referral to a Gastroenterologist. It's really tricky, but it sounds like you'd benefit from seeing an Endo and a Gastro based on the info you've given.
I agree with Marz - Dr Haskell's book " Hope for Hashimoto's " certainly did give me hope. I was diagnosed with Hashi's 3 months ago and was in despair until I read this book. The NHS only treats the symptoms of Hashis, which is an autoimmune condition. I'm now on phase 1 of Dr Haskell's 3 phase plan and lucky for me that my GP listens and is willing to test my antibodies.
Thank you so much - I'm going to get a hold of it now. Should my doctors be treating me? I only ask because so far she's left me in the dark as to whether they will treat me or not! I understand if there are no symptoms, but I've been symptomatic and just unwell for such a long time now!
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