Don't know what to expect

[mamamazz]

Hi a year ago I went to my docs complaining of tiredness, foggy brain, lack if libido, dry skin and slight swelling on my neck they did a thyroid test but I never got the results and I just left it as felt a bit better over the summer. Since sept I've felt awful then in Dec I started having back problems and been suffering sciatica with bad pins and needles since. A few weeks back I went back to my docs as now in addition to above I am freezing all the time, difficult in concentration, totally exhausted and just not able to deal with normal life, croaky voice with a couple of choking incidents and difficulty in swallowing large painkillers. I had also been advised by my dentist to get a thyroid function test done due to unusual excessive gum bleeding. Been to doc today my tsh level is 0.75 (taken at 10am) they didn't test t3 or t4 my b12 is low and being retested in a weeks time. This time the doc actually examined my neck and immediately wrote out a referral for an ultrasound saying she needed a closer look at my thyroid to see where to send me next. The swelling is now more pronounced Am now worried/confused and feeling like a worn out little old lady am only in early 40s showing signs if peri menopause. Any words of advice etc would be appreciated.

[dominiquej]

I also had a swollen neck (it was almost like a "collar" after several days) and difficulty swallowing etc and I was sent for ultrasound - that showed up straight away that it was Graves' disease and I was actually shown all the little nodules on my thyroid. After that it was kind of a relief because I knew what I had and all the other little symptoms (some of which you have described) I had all started making sense. It was the first step to finding out what was wrong and starting the appropriate treatment. I tried carbimazole to stabilise the hyperthyroidism and in the end had radio-active iodine treatment (didn't want an operation under any circumstances). Now I've gone the other way - hypothyroidism for which I'm taking levothyroxine. So basically I've gone from end of the scale to the other! But none of the treatment has been too much of an inconvenience. It's just been a case of being patient and waiting for things to stabilise really. Bear in mind that your current condition could be also having an impact on your emotional well-being as well. It is a bit depressing to begin but I did a lot of research online about it all and being well-informed made me feel a lot better about it all. I'm quite happy that I'm hypo rather than hyper now - I had started getting heart flutters and trembling also when I was hyper which is not good. If you are hyper you don't want it going untreated so you are clearly taking a positive step in the right direction. I hope your ultrasound helps diagnose the issue anyway. Having just joined this forum I'm finding it very informative and of course you are communicating with other people who are or have had similar problems. I'm 52 by the way but exhibited mild symptoms of hyperthyroidism for a few years without really being aware of it until the swelling of the neck, but in the summer I met up with a couple of ladies on an OU residential course and both of them I think were in their twenties, so I'm assuming it can strike at any age.

[Hidden]

Your doctor should do full thyroid function tests, which include TSH, Free T4 and Free T3 (if poss), and thyroid antibody tests to check for autoimmunity. At least you're getting the scan but seems weird to me that the docs not doing the above as well? Have you been referred to an Endo?

Some of the symptoms you mention can be attributed to low B12, although it's tricky because it's very similar to an underactive thyroid. From reading this forum I would say a huge number of people have both problems. I actually have an overactive thyroid (Graves) and a B12 deficiency. If your doc says your B12 is low then they should be treating you, there is really no excuse to wait for a retest. The range for the B12 test is considered by many to be set way too low, so a lot of people at the low normal end of the scale actually have a true deficiency. Do you know what your test result was?

Read up as much as you can about this as it is important to get this treated properly alongside your thyroid problems. The following are good websites:

pernicious-anaemia-society....

b12d.org/

You could also ask your doctor for gastric antibody tests, i.e. anti-parietal cells and anti-intrinsic factor, which can be present (but not always) in pernicious anaemia.

It's important that you also have tests for folate, ferritin and vitamin D, as all these tend to be low in thyroid/PA sufferers.

All this can be very difficult to digest when you're feeling so ill and barely able to get out of bed, but it's worth getting as informed as possible. Or perhaps get someone close to you to do the reading and fight your corner. Ask for copies of every test you have done, including the lab ranges. If you're not sure what they mean, post them!

Good luck x

[Redditch]

better over the summer? What's your vitamin D?

Right... get the results... get tested again... buy some vitamin D3 off that there internet Natural Products Corp is recommended by the bloke in my thyroid book. see if you feel better with Vitamin D supplements - Mine was 37 when I was first diagnosed and I have got it up to 100 by taking 5000 IU of Vitamin D3 a day for a month... Having a good vitamin D level helps everything work better

Also Barry Durrant Peatfield says take at least 1g Vitamin C a day and take Selenium

You are certainly going to have your work cut out with this GP.. I would consider changing.. I was diagnosed a year ago, was professional woman with ace career and cut down with freezing cold, brain fog, muscle weakness, fatigue, and after an initial diagnosis, was told that I was "fine" after 3 months of treatment. I certainly didn't feel fine so I changed GP.. New GP said it couldn't be the thyroid making me feel rubbish so started testing me for all sorts of exotic things and then decided I was making it up. I wrote to him, a long letter with extracts from the books, suggested firmly but politely that he didn't know what he was talking about and I wanted a referral.. Paid to see Dr Boardman, got a plan.... changed GP again to follow the plan and am FINALLY feeling good. You need them on your side, and you may find getting someone to go with you is a good idea... When I was really symptomatic I couldn't argue my case properly... the damn disease seemed to have taken half my IQ. Good luck with this...

We're here for you

[mamamazz]

Thank you for the replies ive been doing lots of reading and research so its all making a bit mkre sense. Not sure what the vit b reading was she did follate which was fine but again do t know actual level. I shall ask for them whe I go I for next lot will also ask for the results from last year. So glad I ffound this forum.