floundering and being fobbed off - any words of advice on what to do next?

[mamamazz]

I posted some time ago after getting normal TSH levels of .75 after being advised to get my thyroid function tested by other health professionals.

when my results came back they were normal at .75 but my B12 was low and I was diagnosed with pernicious anemia. I've had the five B12 jabs loading dose (notably some reaction to the injection also) I was also referred for a scan as I have a goiter like swelling and a whole host of symptoms that could be thyroid related.

When I arrived at the hospital I was instead given an xray which I've waited 9 weeks for the results, the xray found nothing untoward so I've been told today by my doc (over the phone as I didn't merit a whole in person consultation) that they've booked a scan referal again and if I dont hear anything by two weeks to phone the docs back again!!! Am fuming as I was supposed to be scanned first time.

I then tried telling my doc that despite the B12 injections which had helped lift my brain fog (woooo can think straight again!) that I was still very very tired and lethargic, sex drive gone still, cant shift any weight despite trying hard and I was now also experiencing muscle weakness and fatigue and I was experiencing joint pain - which when I think about it in my hands I've been getting for about 8 months. I questioned what they actually tested the first time (which was back in april now) and asked shouldn't perhaps I be tested for antibodies - I was told quite rudely that my TSH levels are normal so there is no point in testing for anything else. I also have back problems at the moment and was told that the pernicious anemia was causing it - funny how since getting the B12 its just as bad as ever.

Sorry I am fuming at the moment and just don't know what to do - I suppose it will be have to wait to get the actual scan and take it from there. Am just crying with frustration as I feel so ill yet it would appear that the NHS are more concerned about cost than actually helping people. didn't even get an apology for the wait for the results for the wrong type of test!!!!!

[tegz]

Mazz- you have a bad case of 'NHS fog' around you right now.

Many on here have similar stories- to one degree or another.

People here will tell you that TSH is a good Pituitary test, if one needs it.

I assume the scan you await is ultrasound?

[mamamazz in reply to tegz]

yes its for an ultra sound - that is what they sent me for the first time but they xrayed me instead

[shaws]

Maybe it will take a little longer for the injections to take effect properly.

It is frustating expecting to have a scan then get an x-ray instead, meaning you have a longer wait. Unfortunately, your GP is just spouting what the British Thyroid Association informs them. No medication unless TSH is 10. There is no mention of clinical symptoms being taken into account.

You will have to wait for your scan and see what the result is. If your GP is still of the same mindset, is it possible you can have a private consultation? If so, email [e-mail] who has a list of private doctors.

It is very frustrating when you feel so ill.

[rosetrees]

All the symptoms you describe could also be caused by adrenal problems. Can you afford to get the Genova 24 hour saliva test done? Details of how to order it are here on the thyroidUK website thyroiduk.org.uk/tuk/testin...

I had it done and that, and the adrenal quiz here adrenalfatigue.org/take-the-adrenal-fatigue-quiz showed me that my main problem was probably adrenal.

Once you've had the adrenal test done, could you afford an appointment to see Dr P?

[mamamazz in reply to rosetrees]

not really got any funds at the moment or would be looking at getting every test I could just to get a good overall picture - fingers crossed I am expecting to do some private additional work later this year - first thing I am spending the money on is tests!

[mamamazz in reply to rosetrees]

just took the quiz and its only moderate - I also thought it may be adrenal stress earlier this year and have looked at herbal remedies (am training as a herbalist and natropath) so been careful to eliminate stress and up nutrition

[Hidden]

You probably haven't had enough B12. The loading dose is actually 6 jabs, and if you have neuro symptoms the guidelines allow for injections to continue every other day until no further improvement. You should return to your doctor and refer them to the BNF section 9.1.2, here is a link to this effect:

evidence.nhs.uk/formulary/b...

Some other things to consider:

- It took you a while to become ill, it will take a while to feel better.

- It is common to feel worse before you feel better, this is often called start-up symptoms.

- You won't get the best out of B12 treatment if your folate and iron are low. Have you been prescribed any folic acid? Do you know your folate and ferritin levels?

-A good B-complex can also help, to keep the other Bs in balance.

- Potassium levels can drop, so lots of potassium rich foods are a must.

- Lots of people use MethylB12 sprays and sublinguals in-between injections, sometimes they help, sometimes not.

Here is a link explaining some of these things in more detail:

pernicious-anaemia-society....

You need to learn as much as you can about this condition in order to get the best treatment, I hope you feel better soon. x

[mamamazz in reply to Hidden]

thank you - my folate and iron were ok and she double checked my results before booking my first B12 jabs - I've also heard good things about the sublinguals so will look into that. I do feel a bit better and realise that its probably been the last 6 years that I have slowly been getting worse. Interestingly right after having a baby after having gall bladder disease and op - I had the op and then got pregnant very much by surprise two months later. I've just been piecing things all together - I've never felt right since having my last baby. I went to my docs over a year ago with similar symptoms and had a small swelling on my neck - they told me then all my bloods were normal and the swelling was nothing - so wish I'd pushed a bit more then as I've just gone down hill over the last two years to the wreck I am now. Worst thing was I was just putting it down to age!!!!

[Hidden in reply to mamamazz]

Having babies triggered mine as well; still, I wouldn't be without them Did you have your gall bladder removed? I think that leads to B12 deficiency as well - something complicated to do with enterohepatic circulation. I was just going to say be a bit wary of the doc saying your folate and iron are fine, you could be right at the bottom of the range. Might be worth getting a print-out of your folate and ferritin results when you're next in. H x

[mamamazz in reply to Hidden]

Lol no I wouldn't be without my three dahlink mimimees I am training as a herbalist and was already wondering about the gall bladder causing the b12 deficiency as obviously my liver is working much harder to produce bile as is needed therefore reducing my ability for optimum digestion. I know when I have a very raw juice smoothie diet I feel so much better, am just trying to make life long eating habit changes bit by bit getting there. Yes I will contact surgery and ask for a copy of my results then get swotting up for next consultation after scan feeling a bit more positive now thanks x