Still reeling from GP appointment

[Janey54]

So wanting to take charge of my conditions and understand more about what's going on I asked for a copy of my blood test results. The receptionist said she would ask the GP and let me know. At the end of last week the surgery phoned and said the GP wanted to see me about the results. This is despite the fact that another GP at the surgery had already seen me and prescribed Vitamin D tablets. Anyway I duly went along to the appointment although I was worried as it was with one of the doctors that I usually avoid because of his poor bedside manner and lack of sympathy, this was a doctor that three years ago told me that one B12 injection a year would be sufficient to keep me going for a year!

I took my husband along as I have trouble remembering what's been said to me (brain fog) and I wanted moral support just in case. He began by saying that he had been researching my conditions of Pernicious Anaemia and Hypothyroidism over the weekend (that didn't sound good) and he had come to the conclusion that I didn't have PA. He said it is incredibly rare and that he only has 3 patients with it at their surgery. He wanted to know why I thought it was PA and I said that I had been told by other doctors in the past that this is what I have, I've also had numerous tests since they discovered my B12 deficiency 7 years ago. He then went on to say that he also felt I was borderline for hypothyroidism, this is despite that fact that I have been taking medication for over 14 years and have had my blood tested every year and not once has a doctor suggested that I don't have it.

I'm sure you can imagine how I was feeling at this point, I have classic symptoms of hypothyroidism and B12 deficiency, stopping my medication was unthinkable to me.

He went on to say that if he was a robot he would look at my blood test results and stop the levothyroxine and B12 injections as on paper I don't need them, however, he didn't think I would be happy with that and so he was going to continue with them.

I explained (despite the fact that I was shaking at this point) that even if I didn't have PA and I have no reason to suppose I don't, I am taking PPI drugs that inhibit the absorption of B12 and so would still need to have an injection. I asked if he was only taking into account the TSH result and he said yes because the TSH is suppressed then that's fine and that you don't need to consider the T3 or T4. I said that in order to get a holistic view of my conditions then you would need to consider all three parts of the test. His reply was that taking a holistic view of my conditions would need hours of tests and work and if I wanted that then I would have to go privately to get it.

He went on to say that this is the danger with looking up your symptoms online and then fitting them to the conditions that you think you have. This is despite the fact that for both conditions I went to the doctors with my ailments and they told me what was wrong. It's only recently that I've wanted to know more because I had lots of recurring symptoms and felt that doing some research for myself was a good thing.

The upshot of the meeting was that he felt I still wasn't on enough vitamin D and that this would account for a lot the the symptoms that I have so he has given me some liquid vit D to take as well as the tablets I'm on. Also he said I needed some iron as this was borderline so he's given me iron tablets for 8 months.

I am now feeling that he could stop my medication at any point he feels like, although I would question a doctor that continues to medicate you despite thinking that you don't have the conditions you are being medicated for. I also didn't get a copy of the blood test results but have since asked for one again although the receptionist was very short with me I'm hoping they will provide it.

Once I have them I'll post them online so that I can get some help from the community that knows about these things.

I'm due to see an Endocrinologist at the end of March as I requested this a few weeks back so I can get a better picture of what's happening with me.

last month I saw an ENT specialist about problems in my mouth and with my tongue, his diagnosis was: -

1. Traumatic hyperkeratosis left and right cheeks and interior half of tongue

2. Aphthous type ulceration secondary to pernicious anaemia

3. possible oral lichen planus

His letter goes on to say that I have pie crusting, occlusal crimping, keratoses and evidence of parafunctional activity.

I have a biopsy later today to find out more.

Has anyone else had experience of any of the above conditions or can anyone advise me what the biopsy will be like?

Sorry for the long post but I just needed to share that with someone that will understand how it's made me feel.

[shaws Administrator]

Instead of an appointment with a 'qualified' doctor who pronounced that you only needed one yearly B12 injection I think I would rather be diagnosed and treated by a robot as it would have more sense and instinct.

Instead of an appointment with a doctor, it sounds more like an inquisition. It's strange to be diagnosed with Pernicious Anaemia and then told you don't have it and given an injection only ONCE per year. Ask to be referred to a haematologist to confirm as you don't want your surgery messing about. Does he know how serious untreated PA is? NO.

He seriously needs to be educated regarding the treatment of hypothyroidism. Beware of doctors who only take notice of the TSH (although that's what they've been instructed).

The No.2 of your post above is looking at your tongue re PA most probably due to being denied sufficient injections. (They really don't have a clue, do they, of clinical symptoms which stare them 'in the mouth').

It would appear to me that you have been badly neglected in your health with your two conditions, Hypo and P.A. (I have these too). If your problems/symptoms has been caused by your doctor's ineptitude you have reasons for a complaint.

You can send a note to him re taking information from the internet. Say due to the fact that your health has been deteriorating over the years since you were first diagnosed with hypo and you had no knowledge whatsoever from the medical profession re the workings of the Thyroid Gland and how best to recover your health, you are delighted you get support from the Healthunlocked forum recommended by NHS Choices. You can send him a copy of the following (Thyroiduk is on the r/h side).

healthunlocked.com/nhschoic...

and inform him that we've over 23,000 members and obviously there is a serious need in the UK for good and informative knowledge about the thyroid gland as we have the highest number of members (I believe of all the other groups) as they are not recovering mainly due to doctors who only refer to the TSH alone for diagnosis and restrict hormone doses. Maybe give him a article to read:

web.archive.org/web/2010073...

This is from Martyn Hooper of the Pernicious Anaemia Society: the story Another Shocker is definitely a shocker.

martynhooper.com/

[Sewnsew]

Hi Janey, I was diagnosed with oral Lichen Planus many years ago. I had white spots on my tongue and a biopsy showed Lichen Planus. The spots resolved without any treatment. I do now seem to have a "sensitive" mouth and some toothpastes cause soreness, though I can't seem to pin down just what it is in the toothpastes!

Good luck with the endocrinology appointment, I was disappointed when I had an appointment last August. He was a very pleasant consultant who seemed to listen but I think he was just going through the motions. He just did the same TSH and FT4 as my GP, no FT3 or antibodies. He declared I had no endocrinology disease but possibly had Polymyalgia Rhuematica due to a raised ESR! I had no symptoms of this so what was he thinking?

Its all getting me down 😕 I feel my life is just slipping away! Maybe I'm just having a bad day, I'm not usually like this.

Good luck!

[annie-7 in reply to Sewnsew]

Hi Sewnsew, I had a lot of problems with toothpaste. I used to get sore mouth/throat and headache and vague allergy type symptoms. The culprit for me was Sodium Lauryl/Laureth Sulfate. (I think it is used as a foaming agent)

[humanbean]

The rudeness and incompetence of some members of the medical profession no longer shocks me. It seems to be par for the course in relation to thyroid and PA.

Have you considered self-treating? It is very liberating, not having to beg for permission to feel better.

Alternatively, change surgery so you don't have to see the incompetent sadist ever again.

[Janey54]

Thank you everyone for your support and really helpful information, it seems to me that the only way to get what you need is to take charge of it for yourself so that's what I intend to do.

[greygoose in reply to Janey54]

Good for you!