Hi, I am not on any thyroid medication but perhaps if you anyone could advise regarding my swollen legs please. I have pernicious anaemia and have had severe D deficiency plus zinc deficiency. I have raised my D levels and continue to take things for that plus I take zinc and B complex and folate. I have swelling on both my legs just below the knee but towards the inner part of my leg (left leg is worse but right leg is numb). The doctor thought it was to do with varicose veins, but I don't think so. I found an article that described it exactly and it was linked to hypothyroidism. Another part of both my legs now has swelling and my right leg and foot is going more and more numb. I already have peripheral neuropathy from undiagnosed B12 deficiency. I am finding it difficult to feel the floor with my right heel and also to feel the car accelerator with my right foot. This has come on worse like this in the last 6 months. I have monthly injections of B12 with the nurse plus I have started self-injection since 27th April and have done 6 so far fitting in around my monthly jabs. I started self-injection to see if it would improve the feeling sick that I get that I have had since at least 2005.
I have many hypothyroid symptoms and now after seeing one general specialist the doctor said she would refer me to an endo. I don't know how long this will take for an appointment, but it took 3 months for the appointment with the general specialist. I am wondering whether to pay privately as the endocrinologist she is referring me to does private appointments as well, and then perhaps switch to the NHS after initially seeing him. I suppose my question is does anyone have or has had swollen legs along with a diagnosis of hypothyroidism; I am worried about the worsening neuropathy.
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As you have Pernicious Anaemia you are more likely to have another autoimmune disease.
Autoimmune thyroid disease and PA are common
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 if Thyroid antibodies are raised
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)
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
Ask your GP to test thyroid antibodies, TSH, FT3 and FT4 plus vitamin levels
Unlikely to get NHS to test everything
Private testing for ones they miss out
This leg swelling is typical when hypo
do you have any actual blood test results?
if not will need to get hold of copies.
You are legally entitled to printed copies of your blood test results and ranges.
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Come back with new post once you get new results and ranges and/or previous old test results
Thanks for your reply. Yes, I remember Dr Chandy told me last October on the phone that Pernicious Anaemia is a polyglandular disease. I have had all the tests except TgAb which the doctor said she couldn't do. When I had the tests (starting just before last Christmas) no-one told me that I should have them early in the morning and fasting until I started reading up on things. I have absolutely everything tested and they keep testing B12 without my knowledge as they aren't supposed to test once on injections. I even had a morning cortisol fasting test as advised by Dr Chandy and since then, recently, I paid to have a medichecks cortisol saliva test, which tests your saliva throughout the day. I always get all my print-outs and our surgery offers online access to results and to booking appointments. I couldn't see my T3 result online but when I asked the doctor she was able to access it on her computer and printed it out for me. I think I might have posted results on here before but my recent TSH and T4 and T3 in March were:
TSH - 3.5 miu/L [0.3-5.0]
Free T4 - 13 pmol/L [9.0-25.0]
Free T3 - 4.3pmol/L [3.5-6.5]
I did have a full blood count too. Now, I have just read at the top of the printout, and this is typical from what I have read of other people -
Reasons for request - anxiety ?cause
Yes, I was crying in the surgery one day with another doctor because I keep feeling unwell and get frustrated no-one is listening. I was given anti-depressants but only took one as I thought, I am not depressed as such. I have accepted sleeping tablets this time for long-term insomnia - I'm talking more than 30 years - and for once something seems to be working. They are 7.5 mg but I cut them in half and sometimes in half again. I have 3 nights where I take none and then 3 nights where I take half or a quarter. The other thing that might be helping me sleep is I have stopped completely doing all my activities - singing lesson, piano lesson, choir and not seeing too many people as I just want to be quiet. This was not a really conscious decision but something I had to do. I had a panic attack in choir and I just can't stand too many people or input at the moment. Thanks for letting me know that leg swelling is typical of hypo. I have found a couple of photos online that look exactly like my legs, even down to white patches below the knee. The skin on my legs is very dry and flaky and the skin looks scaly - I remember my mum's looking like this, she wasn't diagnosed with thyroid but now I think about it she had a lot of symptoms. Sorry to chatter on. Thanks for your help.
Yes, D was borderline severe 5 years ago after I kept going back to the doctor feeling tired and muscle aches. After I finished the doc's script I then did some research and started taking high-dose D, along with K2 and magnesium, been doing that ever since. Last D test was May 17 (don't think I've had one since) and it was 178 nmol/L so I have no reason to think it has dropped as I continually supplement. Folate in May 18 at St Thomas' hospital as part of other tests, was 11.2 ug/L[3.1-20.5] but it has been higher than that. Funnily enough in Feb 18 it was 17.5 from the GP test in a range 2.6-17.3 when I wasn't even supplementing folate at that time. I only started supplementing folate in April 18 (so only a month before St Thomas' test) and B complex around the same time as didn't know I needed co-factors.
I don't think my cortisol is high enough in the morning, when it should be the highest. This was Medichecks Saliva cortisol :
I don't think so from what I have read. I think we may have had this conversation before. I do have a chart but not sure where to find the actual research.
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