Getting diagnosed

[Jackiez]

I'm 99% convinced that I have PA, I have been feeling terrible for weeks but put it down to the reduction of my Levothyroxine as I am hypothyroid. Having done some research online, I have found that I have most of the symptoms and have had for some considerable time, including neurological symptoms. To be honest, I'm frightened. I'm worried my GP will think I'm imagining things. Would it be better to just go in and say all my symptoms or to say I am worried I might have PA?

[fbirder]

The first thing to do is ask the GP for some blood tests. A Full Blood Count and a serum B12 test, at minimum. A serum MMA (methylmalonic acid) test and a test for anti-IF (Intrinsic Factor) antibodies would be a good. Idea, but it may be more difficult to persuade them to do them.

[Jackiez in reply to fbirder]

Thanks, I will.

[PAS-admin Partner in reply to Jackiez]

Just tell the dr that you read that up to 25% of auto-immune thyroid patients have pernicious anaemia and that you recognize the symptoms and if it could be tested.

[Jackiez in reply to PAS-admin]

Ok thanks.

[Marz in reply to Jackiez]

Why did your GP reduce your Levo ? Was the reduction based on the TSH result ?

[Jackiez in reply to Marz]

Yes, he said I was taking too much levothyroxine and reduced it to 125mcg. Has now reduced it to 100mcg.

[Marz in reply to Jackiez]

On what did he base his comment that you were taking too much ? How are you feeling ? Do you have your results with ranges ?

[Jackiez in reply to Marz]

Based on my last blood results, I forgot to ask for a copy. I feel rubbish, but at least he's ordered a battery of blood tests, so may get an answer soon.

[Marz in reply to Jackiez]

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

The above link takes you to Private Testing through Thyroid UK. Number 11 is the most popular.

Let's hope that your battery of tests do include the correct ones for the Thyroid and NOT just the TSH. Your dose should NOT be reduced on that measurement alone. You also need the FT4 reading - which is a storage hormone and then the FT3 - which is the ACTIVE thyroid hormone. If this is low then it could be the reason you feel rubbish. Reducing your dose when you feel unwell and based on the TSH alone is incorrect. Sadly GP's have little knowledge of the Thyroid it seems.

Tests: TSH - FT4 - FT3 and the Thyroid anti-bodies - Anti-TPO and Anti-Tg.

You need the FULL story - and not half of one. It is possible you have a conversion issue - in that you do not convert the T4 you are taking into the T3 well. Without the results you cannot tell.

[Jackiez in reply to Marz]

Thanks, that's very helpful, he hasn't asked for any more thyroid tests as he's satisfied with his conclusion. I will ask for it to be done. Thanks again.

[Marz in reply to Jackiez]

But are you satisfied with his conclusion ? Perhaps a good idea to obtain the results with ranges and post either here or on Thyroid UK. I have been on the Thyroid Forum for over 4 years so have gained loads of insight into how GP's operate with the Thyroid Testing and their lack of knowledge. Also what is required in order to feel really well - and of the endless battles to have the correct testing.

I read on Thyroid UK of people struggling when Docs reduce the levo based on the TSH. That is completely barbaric. On the Thyroid UK forum we have the Doctor posting who is involved in the most recent research illustrating the unreliability of current TSH testing. He was initially involved in the creation of the Test and the FT3 test. It could be worth you taking a look. diogenes is his name on the Forum aka Dr John Midgley.

[Jackiez in reply to Marz]

Thanks, well no, I'm not happy about reducing levothyroxine dose, considering I feel so bad anyway. I'm so confused about all of this and I can't think straight, or remember what I've been told! I will go back this afternoon and show him the test recommendations. Hopefully he'll be understanding.

[Marz in reply to Jackiez]

Also get copies of previous thyroid tests. You are entitled to them legally.

[Sleepybunny]

Homocysteine and Active B12 can also help to diagnose B12 deficiency. A full blood count may contain useful clues. can be helpful to know folate and ferritin levels . Some of the B12 deficiency diagnostic tests can be affected if you are already taking b12 supplements.

b12deficiency.info/b12-test...

b12deficiency.info/what-to-...

B12 Deficiency Symptoms

b12deficiency.info/signs-an...

pernicious-anaemia-society.... See Symptoms Checklist.

lots of info about B12 and PA on above websites.

Recent UK documents (see list below)make it clear that people who are symptomatic for B12 deficiency should be treated even if their B12 blood levels are normal range.

1)BCSH Cobalamin and Folate Guidelines

page 29 is a diagnosis flowchart that shows the recommended process a medic should follow if they supect someone may have B12 deficiency. Not all Gps are aware of this document. I gave a copy of it to my GPs. page 8 gives details of Uk B12 treatment including for those who have b12 deficiency with neuro symptoms.

2)bmj.com/content/349/bmj.g5226 See 5th summary point.

You might find it helpful to read the pinned posts on this forum.

Untreated or inadequately treated B12 deficiency can lead to permanent neurological damage.

B12 books

What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper

Could it Be b12 by Sally Pacholok and JJ. Stuart

Otehr links that might be helpful

patient.info/doctor/macrocy...

patient.info/doctor/pernici...

labtestsonline.org.uk/under...

b12d.org

martynhooper.com/

Some people on thsi forum choose to join the PAS (Pernicious Anameia Society). They are helpful and sympathetic and a source of useful info.

pernicious-anaemia-society....

Blood Test copies

I learnt from experience to always get copies of my blood test results as there were times I was told everything was normal/okay but when I got copies I found abnormal results.

[Jackiez in reply to Sleepybunny]

Wow! Thanks for all the information.

[MariLiz]

Underactive thyroid and low B12 have very similar symptoms. Why was your Levothyroxine reduced? That might be causing the symptoms, if you are now under medicated?

[Jackiez in reply to MariLiz]

Yes, that's how I found out about PA symptoms, by researching more about Hypothyroidism. It seems I have been overmedicated for a long time. He's just reduced it again to 100mcg.

[Jackiez]

I saw the GP today, told him my symptoms, he witnessed my ' brain fog' first hand, as I couldn't remember pernicious anaemia! He's ordered tests for B12, folate, ferritin, Hb and Vitamin D, plus FBC, renal,liver,bone and lipid functions.

Also reduced levothyroxine to 100mcg as said I'm still overmedicated. I forgot to ask for a copy unfortunately.

He doesn't think my symptoms indicate PA, but thinks I have some kind of metabolic disorder.