Help!!

[Cabbages123]

Hi have been very unwell for over 2 years now please can you look at my profile and offer any advice .... I really am struggling and don't know what to do doctors have not been much help so far Thankyou to anyone that replies

[Treesong2023]

Sounds like you are in the wars with all those symptoms. It's harhard to read ofof all of them. So it might be better to share your blood tests? If you have not got any...? You need to press for them. Thyroid, B12, Iron and Vitamins ?

[Cabbages123 in reply to Treesong2023]

HiThanks for replying 🙂

Here are some blood results.

Serum b12

4 dec 23 - 298 ng/l range 190 - 883 ng/l

11 Jan 24 - 329 ng/l ( stopped taking omeprazole in December and was having fortified soya and almond milk, all bran and protein powder all containing b12)

13 may 24 - 2000ng/l ( didn't know they were checking b12 and had a jab 2 days before )

Mma -

11 Jan 24 - 0.14 umol/l range 0.01 - 0.42

Intrinsic factor antibodies

2 april 24 0.7 u/ml ( 1 month after loading doses b12)

Haemoglobin estimation

4 dec 23 - 145 g/l range 120 - 155 g/l

13 may 24 - 153 g/l

Mcv

4 dec 23 - 94.7 fl range 80 - 105 fl

6 June 95 fl

Mch

4 dec 23 - 31.2 pg range 28 - 33pg

6 June 31.9 pg

Vitamin d

4 dec 23 - 60 nmol/ L

13 June 70 nmol/L

Folate

4 dec 23 - 5.6 range 3.1 - 20ug/l

13 may 12.9

TSH range 0.35 - 4.94

4 dec 23 - 6.9

Feb - 5.3

13 may - 0.89

13 June- 2.6

13 July 4.0

T4 range 9 - 19

4 dec 23 - 10.5

19 feb 14.5

Tpo antibodies - positive

CRP 1

Serum iron range 9 - 30 umol/l

4 dec 23 - 20 umol/l

13 June - 19 umol/l

Transferring saturation index range 16 - 40%

4 dec 23 - 30.38 %

6 June- 30.25%

Serum transferring range 1.8 - 3.82

4 dec 23 - 2.65 g/l

6 June- 2.5 g/l

Thanks

[Wheat]

hello, I think it's possible, probable, that you have two things going on.

Thyroid and possible B12 deficiency. Covid and ppi's both reduce B12 . Food added B12, then injection showed (falsely) high figure .

You have a lot going on, but try to separate and simplify things, I know difficult as both Thyroid and B12D can have similar symptoms.

Suggest you make list of symptoms attributable to both conditions add their separate blood test results.

Your thyroid is autoimmune hypothyroidism as you have antibodies. It's generally called Hashimotos, but is really Ords if you have no goitre. Ask Thyroid forum for help. From your results you may be having a flare up.

Regarding B12 D , the doctor s should go by Symptoms, but rarely do. Sorry , too tired to continue atm. I hope others can help. x

[MindfulSquirrel]

I’m not sure how much I can say to help, but your description of some of the pain and dysautonomia type symptoms after COVID really chimes with my experience. I’m increasingly of the opinion that my dysautonomia may be more related to my comorbid hypermobile ehlers danlos syndrome plus COVD (😡😡) than my PA but that is just my own theories. It’s so hard picking it all apart!

Are you hypermobile at all? If you’re not then I don’t want to send you on a wild goose chase. But if this is something you might want to explore, I can pick out the things from your list of symptoms that I share and think are possibly due to the hEDS…

[Cabbages123 in reply to MindfulSquirrel]

Hi no I am not hypermobile.Yes it is definitely hard knowing what is what!

I think things were increasingly getting worse before covid then the covid just attacked what was already starting to fail ... so many people suffering now very sad isn't it.

[Treesong2023]

I dont know how long you were on PPI's but they really have a bad effect on digestion of B12 and its methylation (use of B12 and its reprocessing to liver) This was the major cause of my own B12 loss and B12 Deficiency symptoms. I cant see a trend in you bloods, and i am not a healthcare specialist... But your B12 serum is low, your MCV High and Folate low end. Some of your symptoms map to B12 Deficiency ( and maybe Folate?) and therefore - I would recommend you get you Medic / GP on the case. Taking B12 supplements or getting B12 injections - regularly - and long term it WILL help you with some of your concerns i feel...and if not...the B12 does you no harm and you "insured" yourself against physical and neurological issues...

[Cabbages123 in reply to Treesong2023]

Thankyou for replying. Yes I understand where you are coming from with regards to b12 doing no harm and insuring myself against physical neurological issues. It does seem whenever I inject or take the tablets I feel so much worse which is just really scary I'm probably not helping myself in that respect.. need to find the strength mentally to contine through the bad patches I guess to feel better it's just really hard especially with bad anxiety 😕

[Wheat]

hello, I agree with Treesong2023 . Ive looked at your bloods, bio again and symptoms list , I am not medically trained but I believe you have neurological symptoms of B12 D/P.A. and that you should re-instate B12 injections.

Stopping B12 treatment for whatever reason(s) will cause symptoms to re-occur. Consider, EOD injections with folate supplementation.

Healing is not instaneous, the B12 Deficiency, and probable Anaemia (bloods and Breathlessness) have taken years to surface. Many feel much worse known as 'reversing out' when they actually start to heal.

I hope this helps. Best wishes . x

[Cabbages123 in reply to Wheat]

Thankyou. Yes I do think your right, the more I think about it I realise how many little random things were starting to happen and gradually all became worse and seeing as my b12 was 206 in 2016 it makes sense that its probably mostly that! You don't see if when you are functioning well enough then bam you become a no functioning wreck!

[Wwwdot]

Hi Cabbage

First of all a big hug as you are certainly in need in several.

Can I ask why you are taking amitriptyline - and how long for?

I agree with the comments so far that there appears two related but different conditions. I have pernicious anaemia and my hubby has Hashimotos and I am the chief cook and bottle washer for these conditions.

We have both benefited from removing gluten from out diet even though neither of us are celiac or gluten intolerant.

Your gut is key and I did a natural cleans on mine on the assumption I had SIBO and H Pylori. I avoid antbiotics and treated both naturally with herbs etc. takes longer but it’s effective and more importantly it heals the gut.

I then built up my gut took about a year with kefir, kombucha and quality cruciferous veg. I avoided sugar and any processed food. It made a big difference.

I also took co~factors to support my injections and I started on self injecting every other day. I keep a diary and log progress, backward steps, symptoms treatments etc and I have learnt a lot by doing so.

The folks on this forum are very knowledgable and you’ve got some great advice but you need to be prepared for a long self treatment journey. There is no quick fix.

🤗🤗🤗

[Cabbages123 in reply to Wwwdot]

Thankyou for replying. I'm sorry you and your hubby are having the same health problems it's rubbish isn't it! I'm pretty sure b12 is my main issue now it's just hard to know as having no definite diagnosis makes you question yourself which then makes you unsure if you're doing the right treatment! I'm exhausted with it all really. I so want to get better, I'm seeing a doctor on 5th Sept and will be explaining my reasons for believing it's b12, hopefully he will be an understanding doctor who knows a little about it. I've seen a few who say b12 is toxic, only need loading doses then no more are needed, cant be b12 causing your problems or youd be ok by now blah blah .... I guess the ones who have lived it are the only ones who really know and really get it

Sorry forgot ... I've been on amitriptyline since 2020/2021 ish only 10mg as couldn't tolerate more ... was put on it for anxiety , it's probably not doing an awful lot at that dosage ... but I did try stooping it end of last year and my anxiety seemed to get worse again so restarted it