Confused.. b12, TSH, post covid syndrome and perimenopausal..

[B12-118]

Prior to having covid in Dec 2020, I was physically fit and healthy. Started Sertraline in Nov 2017 for severe pmt.

Gave birth in Oct 2018, was induced with hormones and given gas and air.

Had covid Dec 2020, and by March 2021, I was ill with many symptoms fatigue, brain fog, Constipation, neuropathy in feet, poor balance, Blurred vision.

Had bloods done, found b12 deficiency at 118.

Fought for loading doses, had 6 over 2 weeks, felt no better

Started researching and self injecting EOD for 3 mths, improved slowly but still fatigued and in boom bust. GPs were busy with covid so I told them what I was doing but got no support. I'm left with fatigue and brain fog which affects my work. I only work 2 days a week but have a 3 Yr old, single mum, little support.

Did some private bloods and found:

TSH is top end of normal (may be causing fatigue?) Referred on, but endocrinology suggested not high enough to cause severe symptoms so suggested it was long covid so currently diagnosed post covid syndrome and under the clinic, advised pacing.

Have antibodies for Hashimotos

Antibodies for PA are negative

I'm having wild mood swings, irritability and night sweats, more bloods I'm perimenopausal so starting HRT soon at start of my next cycle.

In the HRT apt with nurse... told her about b12 injections and she scoffed and said "psychological"... I was fuming. I agree to reduce the injections over time.

I didn't have one for a week, was flawed with fatigue and headache rang in sick from work, so took b12 injection yesterday.

HOWEVER, how do I figure out what is causing what .. how do I figure out how much b12 to take.

The nurse is saying to test b12 in 3 mths to decide on treatment. Well we all know there's no point in that but by the end of the apt I was just glad she was prescribing HRT and had no fight left in me to challenge her on b12 issue.

I also noticed my potassium was low end.. and want to run my other bloods by you all?

[B12-118]

My blood results, I didn't fast for the bloods, they were taken at 5pm but nurse said they were all normal

Serum ferritin level 47.0 ug/L [13.0 - 300.0]

B12/folate level

Serum vitamin B12 level > 2000 ng/L [190.0 - 910.0]

Above high reference limit

Serum folate level > 24.0 ng/mL [3.3 - 99999.0]

Bone profile

Serum calcium level 2.30 mmol/L [2.2 - 2.6]

Serum adjusted calcium concentration 2.25 mmol/L [2.2 - 2.6]

Serum inorganic phosphate level 1.25 mmol/L [0.8 - 1.5]

Serum alkaline phosphatase level 64 u/L [35.0 - 104.0]

Serum albumin level 43 g/L [34.0 - 50.0]

Serum C reactive protein level

Serum C reactive protein level < 4 mg/L [0.0 - 10.0]

Liver function tests

Serum total bilirubin level 7 umol/L [0.0 - 21.0]

Serum alanine aminotransferase level 16 u/L [0.0 - 40.0]

Serum alkaline phosphatase level 64 u/L [35.0 - 104.0]

Serum total protein level 72 g/L [60.0 - 80.0]

Note new reference range from 24/11/21

Serum albumin level 43 g/L [34.0 - 50.0]

Serum globulin level 29 g/L [20.0 - 35.0]

Note new reference range from 24/11/21

Serum lipid levels

Serum cholesterol level 4.5 mmol/L

Serum triglyceride levels 1.80 mmol/L

Serum HDL cholesterol level 1.7 mmol/L

Serum cholesterol/HDL ratio 2.6

Refer to NEELI guidelines to aid interpretation

of lipid results.

Serum LDL cholesterol level 2.0 mmol/L

Serum non high density lipoprotein cholesterol level 2.8 mmol/L

Urea and electrolytes

Serum sodium level 142 mmol/L [133.0 - 146.0]

Serum potassium level 3.5 mmol/L [3.5 - 5.3]

Serum chloride level 103 mmol/L [95.0 - 108.0]

Serum urea level 8.4 mmol/L [2.5 - 7.8]

Above high reference limit

Serum creatinine level 63 umol/L [50.0 - 110.0]

GFR calculated abbreviated MDRD > 90 mL/min

Refer to NICE guidance NG203 for more information.

FOLLICLE STIMULATING HOR taken on day 3 of period which is follicular phase.

Serum follicle stimulating hormone level 23.5 iu/L

Reference Ranges:

FSH Follicular Phase 2.5 - 10.2 u/L

Serum TSH level

Serum TSH level 4.04 mu/L [0.35 - 5.5]

Comment: Not compatible with primary thyroid failure

Full blood count

Total white blood count 6.7 10*9/L [4.0 - 11.0]

Haemoglobin concentration 134 g/L [115.0 - 165.0]

Platelet count - observation 227 10*9/L [150.0 - 400.0]

Red blood cell count 4.27 10*12/L [3.8 - 5.8]

Haematocrit 0.426 1/1 [0.37 - 0.47]

Mean cell volume 99.8 fL [80.0 - 100.0]

Mean cell haemoglobin level 31.4 pg [27.0 - 32.0]

Mean cell haemoglobin concentration 315 g/L [320.0 - 360.0]

Below low reference limit

Red blood cell distribution width 13.1 % [11.0 - 14.8]

Differential white blood cell count

Neutrophil count 3.9 10*9/L [1.7 - 7.5]

Lymphocyte count 2.0 10*9/L [1.5 - 4.5]

Monocyte count - observation 0.7 10*9/L [0.2 - 0.8]

Eosinophil count - observation 0.1 10*9/L [0.0 - 0.4]

Basophil count 0.0 10*9/L [0.0 - 0.1]

[Gambit62 Administrator]

The scientific way to rule things out or in would be to look at each option one at a time. If you feel that the injections are working for you then stick with them because getting a base line for B12 would mean stopping for months now - and possibly longer.If you have antibodies for hashimotos then I would have thought you should be starting treatment rather than waiting for your TSH to become raised but as I understand it medical opinions are very divided and when you start treatment it can totally throw you but suggest you follow up on the TUK forum on that. Also starting that and HRT at the same time would go against trying one thing at a time to rule things in or out.

healthunlocked.com/thyroiduk

[nellie237]

Hi B12-118,

TSH at 4.04 mu/L [0.35 - 5.5] is quite high, and indicates your thyroid is struggling (esp as you have Hashi's antibodies). I am surprised that you didn't get FT3 & FT4 with these results.

If you'd had TSH tested at 9am it would have been higher. I would suggest you need to test again.........along with FT4 & FT3. The simplest way to do this is with a finger prick test with Monitor My Health (an NHS lab). Cost is £29 and you can get 10% discount with a code from Thyroid UK.

Results are usually available within 48hrs..........then post on the thyroid forum.

thyroiduk.org/help-and-supp...

NB It would be a good idea to check vitamin D too.

[Sleepybunny]

Here's a few links that might be useful.

Some links may have details that could be upsetting.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Testing for PA

pernicious-anaemia-society....

It is still possible to have PA with a negative result in IFA or PCA test.

Link about "What to do next" if B12 deficiency suspected or recently diagnosed.

b12deficiency.info/what-to-...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

One thing I recommend is to get a copy of the local guidelines on B12 deficiency for your CCG (Clinical Commissioning Group) or Health Board and compare the info with national guidelines on B12 deficiency.

NHS article about B12 deficiency (simply written, lacks detail in my opinion)

nhs.uk/conditions/vitamin-b...

BNF Hydroxocobalamin

bnf.nice.org.uk/drug/hydrox...

NICE CKS B12 deficiency and folate deficiency (aimed at health professionals)

cks.nice.org.uk/topics/anae...

B12 books I found useful

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

UK treatment info is out of date in above book. See BNF hydroxocobalamin link.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD

There's a lot more I can post but I didn't want to overload you.

Just let me know if you'd like me to post more info.

I am not medically trained.

[deniseinmilden]

Right. Either educate the nurse (she is wrong) or in your head tell her to get lost.

Loads of us know where you're coming from.

Hormones make you feel terrible. Thyroid issues make you feel terrible. B12 issues make you feel terrible.

It's very hard being a single parent, especially to a 3 year old.

Take one thing at a time.

Do plenty of B12 injections - do enough that extra ones don't give you any further improvement. They are safe and you can't overdose so make sure they are at the upper limit and so you can tick that problem off your list.

Ask about the thyroid issues on Thyroid UK - they are brilliant.

As you say you are at the low end of potassium and I suspect several other vitamins and minerals too. Your iron levels aren't good and your haemoglobin concentration is low, which will also be making you feel terrible.

Lots of deficiencies wreck your mental balance and are fairly easily sorted so that's a good place to start.

I can't see folate...

For your B12 to work properly you need to have plenty of all vitamins and minerals but especially folate, potassium, magnesium, iron and vitamin D.

Ideally get these tested and eat a diet rich in all of these every day. Red meat and fish plus green veggies, nuts and seeds will be a good guide but look things up. Supplement cautiously if you can't get all that you need from your diet.

Otherwise your bloods look pretty good and healthy.

I can't advise re hormones but know that if my progesterone drops I feel appalling so once you've got your vitamins and minerals at the upper ends of the ranges and have got your thyroid problems as sorted as possible, definitely see what suits you best hormone wise.

Good luck and keep in touch - let us know how you're getting on and please ask more questions if you need to.

Get practical help and support wherever you can and don't be hard on yourself. x

[FlipperTD]

Scientist, not medic.

Purely on the potassium front, yes, it's borderline.

Things that can drop your potassium include diarrhoea, or use of laxatives. [Anything that can cause fluid loss can do this.]

Conversely, things that can cause your potassium to rise include poor technique in venepuncture, and variable storage conditions for the sample before testing.

It's important to consider these before taking any other action.

[bookish]

I agree with nellie237 that the late in the day testing will have lowered your TSH somewhat, as will eating, and it is too high anyway. Ask on the thyroid forum and give your private results if you have FT3, FT4, antibodies etc. I'm sure you know that the nitrous oxide (gas and air) would have inactivated a proportion of your B12, and as it seems likely that covid affects methylation/B12/folate, you are clearly in need of your B12. It may be that covid has temporarily worsened your thyroid function but getting your vitamins and minerals right can only help that too. Might be worth thinking about adding a small amount of methylfolate if you aren't already. But I'd agree with deniseinmilden and Gambit62, that adding HRT to the mix at this point is probably not a good move - later, maybe. What about blood sugar - can't see an HbA1c, and how is your diet. Best wishes

[Rexz]

B12-118, I too was fighting a similar issue although I did not have COVID at the time I was trying to get a diagnoses of all my PA symptoms and eventually ended up diagnosed with both PA and Hashimoto's. The book that helped me immensely was "Thyroid Power" by Richard Shames MD. In that book there are many questionnaires/quizzes or self-tests based on your symptoms that you are scored on and at the end you get a total weighted score... My score was very high indicating Hypothyroid. I made a copy of all these self-tests that got into great detail on all my symptoms with scores and took those along with the book to my next doctors appointment and handed them to my doctor. That was the trick, I was then given a prescription for Levothyroxine and Liothyronine...oh yes also had Thyroid antibodies indicating Hash. Feel so much better now.

Best wishes