Yet another clueless G.P. - I despair! - Pernicious Anaemi...

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Yet another clueless G.P. - I despair!

topazrat profile image
27 Replies

So, I've been getting symptoms that I'm pretty sure are down to my thyroid being on the fritz. I was recommended a new G.P. at the practice who takes an interest in autoimmune problems. So I sit down, tell her that my hair is falling out, I'm gaining weight, tired, palpitations etc and that I have autoimmune P.A. No you don't, she says. So I tell her to type intrinsic factor into the search box on my notes. Oh look, TWO positive test results. But that doesn't mean you have P.A. she says??!?!?!?! So I say, OK, delete that and type in parietal cell antibodies, so she does. Oh, it's positive, so you do have autoimmune P.A.? Then the clincher, that she doesn't have a clue.........................what do you take to treat that? Brick wall, meet head!

THEN she tells me that my symptoms are probably all down to anxiety and do I want some medication to help with that? I had to bite my tongue to stop myself from saying something naughty! But at least she's ordered some bloods.

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27 Replies
Cb1963 profile image
Cb1963

Well if you didn't have anxiety after that discussion you certainly would have now, boy O boy don't you love having these conversations, let's hope the doctor can read your blood test results properly, hope everything goes better for you over the coming days 😊

Jillymo profile image
Jillymo

How you held your tongue is beyond me.

If you have PA why the hell were you not prescribed injections if docummented on your notes ?

With regard your thyroid put any results you have and insist on the margins on the thyroid uk site. They will guide you.

If your B12 and ferritin come back low insist on treatment via a loading dose. If refused point her to the nice guide line's.

Totally clueless and incomptent and to think you had already been diagnosed via your bloods makes me angry. You held your cool where as I would have blown a fuse. 🤬

I do hope you get some answer's soon. 🤗

topazrat profile image
topazrat in reply to Jillymo

The surgery have been giving me 3 monthly B12 injection for years! There's none so blind as those that don't read the notes in front of them!

As for the thyroid, my TSH has been yo-yoing between 2.8 and 5 for decades! (range 0.38 - 5.33) But that, of course, is normal.

Jillymo profile image
Jillymo in reply to topazrat

Did she have a stick and a ruddy guide dog ? 🦮 That really takes the pee, I would have been furious.

Was it only TSH she checked ? Have you thought about doing a private test ? I did one through Blue Horizon who were very good, I stuck the results on thyroid UK. Dont quote me but I think you can also do one through the NHS. Your symptoms are very much the same as what I had.

It seem's that's all they can diagnose these days is anxiety ! I bet had you have let her she would have wrote you a prescription for antidepessants.

I can remember the hair loss and scrapping it out of the plug hole. The palputations were worse at night or with any form of exertion. I remember could feel and hear my heart beating as I lay on my pillow at night. GreyGoose is very good with thyroid results on the thyroid site and has helped me a lot over the years.

topazrat profile image
topazrat in reply to Jillymo

Its just TSH that she's doing and if all comes back 'normal' again, I shall indeed be doing a private test.

Yes, she did want to write me a script for 'something to help with my anxiety' but I politely told her where to stick it 😜

Jillymo profile image
Jillymo in reply to topazrat

For the life of me why the hell do they just test TSH when it tells them only part of what is going on ?

What a load of nerds we are dealing with. 🤓 I would have shoved that script where the sun dont shine. Grrrrr

Good luck......your going to need it. 🤞

Cornwaller profile image
Cornwaller in reply to topazrat

TSH alone is not really adequate to understand what's going on with your thyroid. You really need t3 and t4 as well. Nonetheless a TSH of 2.8 to 5 should ring alarm bells that you may have hypothyroidism particularly if you also have clinical symptoms. A trial of thyroid medication could confirm a diagnosis.

topazrat profile image
topazrat in reply to Cornwaller

I know this, you know this, but unfortunately, the NHS has its head firmly in the sand and won't budge. It is very frustrating.

Mixteca profile image
Mixteca in reply to topazrat

The thyroid group can help you with that and point you towards all of the tests needed for an overall clinical picture. Very predictable GP response that is all too common and maddening, to say the least.

Cherylclaire profile image
CherylclaireForum Support

I wonder what she believes the Intrinsic Factor antibody (IFab) test is for, then ?

I also wonder why on Earth you were retested a second time in the first place, given that you already had a "positive" on record.

When my hair was still falling out after my B12 loading injections back in 2016, my folate and ferritin were tested and found to be low enough to be likely causes- although neither were ever below range, they were erratic for several years. My GP thought a ferritin level of 60ug/L and below could cause this symptom. My Oral medicine consultant later said that he preferred mine to be at least 80 because of angular cheilitis and burning tongue.

I hope both are being checked along with thyroid - and that direction of travel is looked at as well as what might have already gone below range. Having to fight is very tiring and does make you reluctant to bother - but guessing at causes can also mean a long wait for recovery.

Vitamin D too.

My occasional arrhythmia at one point (2019?) increased suddenly and became more severe - so I ended up having a 24hr heart monitor that showed 4,000 episodes and gave me a diagnosis of ventricular ectopics. For this I was prescribed statins by my GP, although I was told that this condition can start for no known reason and stop in the same way, was uncomfortable but not dangerous or a precursor of anything serious. No need to see a cardiologist. So I refused the statins and the condition went away a few months later. Just knowing that it was neither dangerous or likely to stay around was a relief though.

I have recently (a couple of weeks ago) been put on statins. A routinely offered Lung Health check resulted in a scan which incidentally picked up calcification of the coronary arteries (CAC). This time I have pushed for a cardiology appointment because I still have no idea of the extent or severity of the damage. Like I said, monitoring direction of travel allows for early intervention - I'd rather not wait for chest pains !

Set your mind at rest regarding any newly-arising issues - even if it means seeing a different doctor or having to be a bit stubborn.

topazrat profile image
topazrat in reply to Cherylclaire

Ferritin and folate (and B12, of course) are on the list. Vit D is fine, as I take a daily supplement due to a previous deficiency. It is now right at the top of normal range. The Doc who took the second IFab got short shrift from the senior partner for doing it.

It'll be interesting to see what the folate is like now, as at diagnosis it was off the top of the scale. Stupid doc put me on a supplement with folate in before checking the B12 level!

Cherylclaire profile image
CherylclaireForum Support in reply to topazrat

Ever feel like you drew the short straw GP-wise, Topaz ?

topazrat profile image
topazrat in reply to Cherylclaire

Yup! 😏

Marz profile image
Marz in reply to topazrat

Please be aware that your B12 test result could be off the scale due to your injections. I have read some cases where Docs want to stop injections - due to their lack of understanding (option 2 - ignorance !) Another battle ...

Medicine is a business - so all about the bottom line and not the patient - sadly. Good you are here for support and advice....

topazrat profile image
topazrat in reply to Marz

As I only had my NHS jab last week, I hope that they will realise that, but if not, I will be pointing it out.

Marz profile image
Marz in reply to topazrat

Doubtful ! Was it pointed out on the Test request form ? Doubtful.... 🤔

Wheat profile image
Wheat

Hello topazrat, well, it's awful, frightening really. Unfortunately it is only going to get worse. (Not taught about it at all now). Fortunately, you know better. Fingers crossed for you. 🤞🤞

topazrat profile image
topazrat in reply to Wheat

Like most of us, I've had to become my own specialist. But it is so tiring and disheartening when 'trained professionals' don't have a clue and refuse to be told educated by people that are actually living with the conditions and know better than they do.

Wheat profile image
Wheat in reply to topazrat

I totally agree. It's disheartening and very frustrating, and expensive. I can no longer call them 'professionals', they are medical personnel. Sending my best wishes, x

besshilldad profile image
besshilldad

Sounds about right. Docs new policy is prescribe pills and get rid. My practice refers patients to the pharmacy all to often. Who prescribe pills for anything or everything Getting to the actual cause is far to time consuming.

Katherine123 profile image
Katherine123

Topazrat you are definitely hypothyroid with those numbers. If you were in another country they would treat from 3 on a TSH test. I have pernicious anemia and hypothyroidism the 2 can go hand in hand. As your thyroid numbers are swinging you will need thyroid antibodies checked for Hashimoto's. If you are paying for a private test make sure you get one that checks them. Your symptoms are saying thyroid. I would also ask your doctor for any early morning cortisol test as B12 and thyroid take down the adrenals. They took mine down. If I read right you are getting B12 injections every 3 months? I would not be able to survive on that B12 regime.

topazrat profile image
topazrat in reply to Katherine123

I will definitly take a private test that shows antibodies, and shove it under the G.P.s nose if it is positive and explain it in simple terms that even they can hopefully understand. I will ask about the cortisol, but I would expect them to say no, which means paying privately again.

I SI weekly, as I can't survive on 3 monthly either - but according to the Doc, 'a 3 monthly B12 injection corrects the deficiency, so you that won't have symptoms' OK then Doc, maybe you should do some research yourself.

Katherine123 profile image
Katherine123 in reply to topazrat

Re: cortisol your best bet maybe is to pay for a 4 point saliva test along with dhea. It is just a postal finger prick test. It is better than the early morning cortisol test as it measures activate cortisol rather than active and inactive which the NHS one is. I am somebody that would not survive on 3 monthly B12 injections. I have had to daily or every other day for healing. I was left a long time time without B12 and have severe nerve damage. I am now trailing twice a day self injections and can really feel the difference.

B12, thyroid and cortisol do go hand in hand.

Mixteca profile image
Mixteca in reply to topazrat

I've had several serum and 24 hour urine cortisol tests done via GP. All high, which is probably due to long-term chronic stress. Yet to have the Dhea and saliva ones done...

Doris11 profile image
Doris11

I despair 😞

Technoid profile image
Technoid

"THEN she tells me that my symptoms are probably all down to anxiety and do I want some medication to help with that?"

My imagined answer to this doctor: "Well how are you doing with your own medication?"

Doctor : "What medication"?

Me : "The one you take to treat your gross stupidity?"

🤣

topazrat profile image
topazrat in reply to Technoid

🤣

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