1st Haematologist Appt

[JJ1314]

Today I had my first haematology appointment. I wasn’t looking forward to it after reading some of the posts here. Plus I had to fight my GP to get the referral in the first place. It’s fair to say I wasn’t sure what sort of reception I would receive.

My name was called, the haematologist introduced himself and went on to say B12 was his particular area of speciality, that B12 fascinated him but was regarded as a ‘trivial’ matter by most medical professions, that the pharma companies weren’t interested because there was no money for them in it.

While I’m sitting trying to absorb what I’m hearing, he goes on to say he’s very disappointed in the way my GP has been treating my B12 deficiency. Then we start talking about me.

There’s no problem with my self-injecting though he would like me to self-inject only once a week rather than every 2nd day. However, if my symptoms worsen on the weekly injections I can go back to every 2nd day.

There was a physical exam followed by a lengthy discussion of my medical history, meds, other diagnoses then all finished off by me supplying blood for numerous blood tests. 15 vials they filled For what he described as “B12 specific tests”

This guy was everything I could have hoped for. I left his office feeling as though I had won the lottery, my wife said she could have kissed him.

This was an NHS consultant who knew what he was talking about but, in my opinion, most importantly of all, he listened to his patient, he spoke to his patient, treated his patient as an intelligent individual, was realistic, and aware of, the difficulties facing sufferers in getting a diagnosis and adequate treatment.

It seems there are some NHS consultants out there who are aware of the problems we deal with after all. Hope others are as fortunate as I have been today.

[Meggydo]

That is absolutely fantastic. We are so pleased to hear that there are some professionals who are genuinely wanting go help. That is all that we want. Bet you could not believe it. Can we all meet him! It gives us some hope. X

[clivealive Forum Support]

"What's his name, what's his number, and how can I meet him?"

(paraphrase of an old Everly Brothers song)

[JJ1314 in reply to clivealive]

If you want to meet him, folks, all you have to do is live in Inverclyde, Scotland, and have yourselves referred to the haematology dept at Inverclyde Royal Hospital 😃Beware the nurse in his clinic who takes the blood samples, though. She has the finesse and empathy of a gorilla with piles.

[ajw1205]

Dagnabit! I miss out by living just a few miles away. Happy for you though

[pitney]

Fantastic news if only we all had that treatment ,(we can but hope) always enjoyed my holidays in Scotland perhaps I should move

[Marz]

Do hope one of those 15 phials will be to test the thyroid I have read your earlier post. Type 2 and raised cholesterol can be linked to LOW thyroid. In fact pre 70's if the cholesterol was raised the thyroid was treated.

Often just the TSH is tested which is only part of the story - you would also need the FT4 and FT3 tested - along with thyroid anti-bodies TPO & Tg- to rule out auto-immune thyroiditis - Hashimotos. Rarely tested in the NHS - sadly. There are over 300 symptoms related to the thyroid - so like B12 can be overlooked. Low B12 - Folate - Ferritin and VitD also go hand in hand with low thyroid.

My husband had a late diagnosis of Hashimotos at 73 - when I added the TSH to his PSA test on the form The result was in range. He had further testing as detailed above and was found to have very low FT4 and FT3 along with anti-bodies. The results were faxed to my Endo here in Crete. At 6pm that evening I had a phone consultation with him and was told to give hubby one of my tablets as he had the same as me It could only happen here !! Actually my Endo was once Head of the European Endocrine Society ...

I see thyroid hormone replacement as preventative treatment as it sorts so many things out. Every cell in the body needs T3 - so when low there simply is not enough to go around and things begin to go wrong

I have Hashimotos - Crohns and a B12 issue due to surgery ....

[JJ1314 in reply to Marz]

Kicking myself now. Meant to discuss thyroid with him yesterday but with everything else being discussed, I forgot. Next appt is in February and I’ve made a note to bring it up then. Thanks for the info.

[Marz in reply to JJ1314]

You are not alone - As I mentioned in the above reply, it is rare for all the correct testing to be done on the NHS. You could have a Private Testing Kit sent to your Home - with results by e-mail. Very popular on the Thyroid UK forum here on HU - it seems the only way nowadays to have the complete story. Have posted a link below with the details ...

thyroiduk.org.uk/tuk/testin...

Happy to help with results

[Shattered-FedUp]

I’m sure like everyone else I’d like to know where I too can see this hero!?

[JJ1314 in reply to Shattered-FedUp]

He can be found at Inverclyde Royal Hospital, Greenock, Scotland

[JMN2017 in reply to JJ1314]

He sounds amazing. I'm now wondering if he happens to know of others in his field that are also interested in B12 and the associated aspects? I can't imagine he is the only person he knows who is interested/experienced/knowledgable in this field. For instance, he must go to conferences etc and meet like-minded doctors, surely?

If he was aware of even the number of people on this forum who are actively trying to get appropriate treatment etc, I wouldn't be surprised if he would be prepared to make a list of these others. Perhaps, if you were to mention it, he may be able to help us find suitable medical care, even if we have to pay for consultation with a suitable consultant.

Just my thoughts .... I'm known to be 'cheeky' and ask when can see some chance of improvement etc

I'm really pleased for you and I do hope you soon regain full health with this great sounding doctor.

[JJ1314 in reply to JMN2017]

He’s Portugese and has been the consultant haematologist at the local hospital for two years. Not sure if that means he has only been in the UK for two years. He was very open, as shown by his criticism of the medical profession’s dismissive attitude towards B12 and voicing his displeasure at my GP’s handling of my treatment to date.

His attitude was very different to that of all British doctors I’ve seen over the years and he very definitely does not have a God Complex.

Didn’t bother him at all I was self-infecting and our only area of ‘disagreement’, was the frequency. He felt injecting every other day was ‘excessive’, we discussed the guideline re frequency of injection where there’s neuro involvement, but he’s not keen on the guidelines either. No science to support them, he said, which we all know anyway.

So he asked me to consider injecting once a week until I see him again in Feb but to go back to every 2nd day if my symptoms worsen again.

I’ll happily mention your points to him but as I said, it’ll be Feb before I see him again. I was actually wondering if he knew about PAS or if I should contact PAS myself to let them know I’ve stumbled across a guy who knows his stuff and is passionate about all things B12.

[ForumUser]

Hello. I know this post is now 4 years old but do you happen to know if this consultant is still there? I am in Glasgow (and yet to see a haematologist) so it would be great to know if he is. Thankyou! I hope your health is good.