Which way, now?: I don't honestly know... - Pernicious Anaemi...

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Which way, now?

Doubleblank profile image
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I don't honestly know how to approach my problems(of which there are many). I have been diagnosed with under- active thyroid for some time and have b12 injections 3 monthly also diagnosed with IBS.

July 2015 I had an op to remove a largish cyst and the ovary it was attached to! a very stressful year - Husband then had operation and I had further tests for chest and lungs whilst this was going on (borderline asthma). To top it all, we had a close family bereavement in November after months of upset..

When I had the follow up after my op. in September 2015, The gynae. consultant said I was over- active and to reduce my dosage from 150mcgs to 125mcgs.

Fast forward to September the following year and the annual blood test for thyroid, the surgery rang next day and told me I was quite under-active and to increase to 150mcgs, then to 175mcgs. I felt worse than ever, I was running on fast forward all the time and no concentration at all just not functioning on a day to day level.

Then I seemed to just drop like a stone, so weak, no interest at all in anything;

as exhausted when I get up as when I went to bed! Saw the Dr. seems to think it's stress and wants me to stay on 175 or alternate doses 150/175 every alternate day! I hate messing about with the medication.

I feel terrible and I have decide to just take 150mcgs until July when they want to test again. But now my throat feels horrible, I am always exhausted, my chest feels 'thumpy'(my word) and I have pins/needles in my leg and into foot. I don't know if this is thyroid or b12 problem.

Sorry to witter on, but would really appreciate any advice or thoughts on what to do next?

Thank you for struggling through such a long post!

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clivealive profile image
clivealiveForum Support

Hi Doubleblank I'm sorry but I know nothing about thyroid treatment but I was interested to read that you thought you may have B12 problems

Do you know if you were given nitrous oxide as anaesthetic during your operation as this interacts badly with B12.

It would also be good to know your folate and iron levels as the three work together

Doubleblank profile image
Doubleblank in reply to clivealive

Thanks for answering,clivealive

don't know about the anaesthetic - would the hospital give that info. if I contacted them?

and are these tests only available privately?

Thanks

clivealive profile image
clivealiveForum Support in reply to Doubleblank

I would have thought it would be recorded in your Hospital Notes. Perhaps your doctor can access them online as everything seems to be "connected" these days.

As to your Iron, B12 and Folate your surgery should carry these out just like any other blood test, but you will need to ask for them as B12 and Folate are not automatically included in an FBC

I wish you well.

Doubleblank profile image
Doubleblank in reply to clivealive

Thanks, have posted this over on thyroid forum, too.

I can't understand why a gynaecologist interfered with your thyroid med!

Only help I can offer is via a friend who had a pituitary tumour over 30 years ago. Damage caused meant she's always needed different hormone treatments including thyroid. She's said even the smallest imbalance in the meds can cause havoc. She has to inject one hormone med daily ( not for thyroid) GP gave her wrong prescription so she had to divide dose for 5 days - 1/2 injection instead of one daily.its taken months for her to get back on track., all her symptoms returned.

Personally I'd stick with the dose the Endo prescribes, rest all you can. I think stress causes all sorts of problems. And ask your GP for a full blood screen in a couple of weeks.

Doubleblank profile image
Doubleblank in reply to

Have not seen an endo. only my doctor.

Hi, I have an underactive thyroid and did well on 75mcg for about 8 years until my world fell apart and I developed (what seemed quite suddenly) chronic fatigue, emotional problems, speech problems, pins and needles and numbness in feet, balance problems, headaches et al. My TSH had gone haywire so doctor just concentrated on thyroid and ignored alternative causes.

To cut a long story short I spent about 2 years back and forth at the surgery and none of my new symptoms resolved in fact some were much worse. Doctor finally sent me to a Neurologist (a Professor) the outcome of which was that I had idiopathic neuropathy, in other words they had no idea of the cause - but did offer me anti-depressants!!

I then invested in a private FBC which showed that my TSH was still high, my T4 and T3 were both low and I had thyroid antibodies which meant I now most certainly had Hashimoto's disease. My B12 was 375, my folate was low and I had MCV over-range. Presented this to doctor, who totally ignored MCV (said it wasn't relevant to anything) as my B12 was in range and basically left me to it, just tweaking thyroid medication but nothing got better, to be quite honest I felt so ill all the time I would have had no idea if the change in thyroid meds was making a difference.

Diagnosed privately with PA, started B12 injections at the end of March and already the numbness and tingling in my legs and toes has subsided quite significantly and my balance has improved - just waiting for it to start working on my brain!!

So in answer to your question - for me these additional symptoms were B12 related but of course thyroid hormones need to be optimal as well - its a bit of a balancing act but TSH alone is not a good indicator you really need T4 and T3 (T3 is the active bit). I changed to NDT about 2 years ago as well but of course again I have no idea if this made a difference, the B12 symptoms masked any subtle (or otherwise) changes.

Hope this may be of help.

Take care, Cassie

Doubleblank profile image
Doubleblank in reply to

Thanks, Cassie

Looks like it's going to be a long road, guess I' d better get my trainers on!!,

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