Next Steps

[brightsideoflife88]

Hello Everyone,

I'm sure you've heard this story many times but your advice would be very much appreciated and apologies for the length of the post.

I'm 27 years old. Had a Partial thyroidectomy February 2014. Was put on leveothyroxine 50mcg in Summer 2014 after becoming symptomatic. All went back to normal until Christmas time.

Symptoms include: extreme fatigue, pain in most bones/joints (especially right shoulder/hip), nausea, dizzyness, brain fog, lack of concentration, pin and needles etc.

GP first turned to thyroid. TSH was normal so increased to 75mcg thyroxine just to see after much negotiation. Was referred to gastro consultant as I was getting excruciating pain in upper right abdomen. This seems to have gone now, although not sure why. I listed all my symptoms to the consultant who actually listened and upped thyroxine to 100mcg.

Went back to GP and said what shall we look at next as we've ticked thyroxine and gastro things off the list. I got a full blood test included these results:

Parathyroid - 2.6 (<6.4)

Serum Vit D - 77 (30-300)

TSH - 0.32 (0.36-5.00)

B12 - 159 (130-800) was 200 three months ago

Folate - 16.7 (4-20)

Ferritin - 38 (12-250)

She said everything normal. It must be CFS/ME/Fybromyalgia. I said I'm not accepting that diagnosis. She has now referred me to rheumatology. She has also restricted my thryoxine prescription to 28 days at a time. I believe she doesn't accept what the consultant did and wants me off her back.

I posted on the Thyroid UK section on here was was given some advice about looking into B12. I joined the PAS and got some really helpful information.

I then decided to go back to my GP to ask about B12 deficiency. The one I usually see is on holiday until the end of the month so I saw another one. Big mistake. She was beyond describing. She belittled me and basically threw me out of the office saying she wouldn't prescribe me anything. She wouldn't even look at the guidelines I'd printed. I have attached what she did to my copy of blood tests. I'm going to write a strongly worded letter to the GP surgery and change GP's ASAP.

In the meantime I have taken people's advice and starting taking 5000mcg jarrow B12. I have now been taking this for 2 weeks. My symptoms have all reduced but not gone away completely. I take it in the morning and feel pretty good until about 1-2pm, then I need a 10-15 minute cat nap.

My question is, how long should it take for me to feel a difference? I know when I have changed my thyroxine it takes 4-6 weeks to kick in. Are other forms of B12 better such as injections? When I find a new GP what should I be asking for?

Thanks in advance for you help.

[Gambit62 Administrator]

Having started to supplement further blood tests are going to be meaningless unless you stop taking B12 for at least 3 months.

5mg is a good dose to be taking - and the fact that you say you feel better in the morning implies that it is having an effect - may just be that you need more - have you tried taking a dose when you start to feel tired and see what that does.

People vary a lot in their responses to B12 - how much they need, what format works best etc so the only thing you can really do is try and see.

In theory injections should be more efficient but the rate at which you lose B12 also increases at higher doses and they don't always last for people - I find my symptoms return the day of a maintenance shot so supplement quite heavily - though I think this is because my immune system is producing antibodies to TCII which gets the B12 to the cell level and it's only when there is so much B12 in my system that the B12 beats the antibodies that I feel the effect.

B12 isn't toxic and you can't overdose on it - one good thing ... or is that two - so there is plenty of room to manoeuvre.

You also need to keep an eye on your folate levels - which were okay in the bloods above but may dip if you start using more folate to process the B12 - best form is from food - so have a look at your diet and try to make sure that you are eating plenty of folate rich food ... aim to be in the upper half of the normal range.

[Gambit62 Administrator in reply to Gambit62]

You may find this site useful in terms of making your complaint

b12deficiency.info/

[Secondchance]

Your B12 is low and as you probably know BCSH GUIDELINES suggest treatment below 200. Ideally you would have had MMA or homocysteine or holotranscobalamin checked before supplementing but this is not an ideal world. The fact you have felt a benefit on 5mg tablets suggests you were probably deficient. You could try changing GP. I certainly considered it but then wondered if I might be worse off...

Make an appointment with usual GP and bring someone with you for support. Bring a symptom diary showing what you have noticed following supplementation and you could consider asking for a trial of injections. Good luck.

[Sleepybunny]

"It must be CFS/ME/Fybromyalgia."

Have a look on Martyn Hooper's blog> There are several posts relating to questions Countess Mar asked in parliament about PA being misdiagnosed as ME/CFS.

martynhooper.com/

"I have taken people's advice and starting taking 5000mcg jarrow B12. "

As Gambit mentioned, once you start supplementing with B12 it can mean any further B12 tests are compromised.

Although I have many symptoms of PA or B12 defic my serum levels are very high due to supplementing myself.

No NHS doctor will consider giving me injections with such high levels so I am stuck with having to fund supplements for the rest of my life.

I wasted a lot of money on private tests and then found out the results were unreliable.

Some of the symptoms you mention eg brain fog, dizziness, pins and needles are usually considered to be neurological symptoms. The NHS treatment for those with b12 defic is more intensive where there are neuro symptoms.

I wonder if your GP bothered to look at his/her copy of the BNF (British National Formulary). Info is in Chapter 9 section 1.2.

I always emphasise my neuro symptoms when I speak to my GP. I am surprised by your GP's response but can sympathise as I was spoken to aggressively by more than one GP. Recent articles including the BCSH guidelines have emphasised the need to treat symptomatic patients even if blood tests are normal/negative.

Useful info

ukneqas-haematinics.org.uk/...

bmj.com/content/349/bmj.g5226

b12d.org

"She belittled me and basically threw me out "

hdapatientcaretrust.com/

This charity can provide a second opinion in some cases.

You can leave review of your GP practice on NHS Choices.

A word of caution, patients who complain can sometimes be blacklisted.

england.nhs.uk/contact-us/c...

nhs.uk/choiceintheNHS/Right...

nhs.uk/conditions/social-ca...

iwantgreatcare.org/

[Polaris]

Yours is a terrible story of ignorance and negligence in medical practice as they do not appear to be aware of the latest research or the drastic consequences of not treating urgently, so good for you for not accepting a diagnosis of CFS/ME and being brave enough to write. I was told by a GP that their biggest fear is being sued for overdosing on B12 when it it should actually be fear of negligence in not following the guidelines on PA/B12 deficiency!

Once neurological symptoms manifest (which you have), an aggressive response in the form of frequent B12 injections is needed (BCSH. Guidelines already given) as there is a short window before symptoms become irreversible. I can't stress how important this is and, once B12 treatment is begun, blood tests are irrelevant as they only measure B12 in the blood and not whether it is absorbed into tissues. Many people on the site self inject successfully and Sally Pacholok (Could it be B12?) believes in covering all bases with supplements - my sister has monthly injections and we both take Jarrows 5000 mcg. with good results - we also have Hashimoto's autoimmune thyroid disease, which is often linked both ways with PA/B12 def. and symptoms overlap.

Many researchers believe leaky gut or gastrointestinal disease is the ground zero of autoimmune disease and I've certainly found avoiding gluten and taking several spoonfuls of sauerkraut daily has probably helped heal the stomach villi to increase absorption of all essential nutrients, including B12.

healthunlocked.com/pasoc/po...

Very best wishes for a good outcome.