Could anyone help me with some advice please? - Thyroid UK

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Could anyone help me with some advice please?

GeorgeTD1710 profile image
50 Replies

In 2016 i was really ill after taking antibiotics and was diagnosed with B12 deficiency.I now have injections every 3 months.My GP thinks me taking PPI for acid reflux for years caused this.I developed a twitch in my thumbs and a burning sensation in both forearms and i always feel warm don't feel the cold.I still have these symptoms today.My folate levels have been low 3 times since this date and been suplemented.My iron level has been supplemented once since then.

Started to have sore muscles and achy joints a couple of years ago ( do have arthritis in neck and knees)

Roll onto this year ill again after antibiotics . fatty liver discovered.Low vit D at 40 so im on supplements for that.Weak positive ANA rheumy ruled out RA,lupus,vasculitis etc.My ferritin levels where 141 in Jan.Today they are 65 rang 13-150 ugl.a little bit more hairloss.lost 7 stone (intentionally) Don't feel excessively tired.

My cholestrol level is ok at 4 but my HDL level won't go above 0.7 should be above 1

My thyroid levels results are as follows

12/1/22 TSH 2.4 range 0.27-4.20 mu/l, serum free T4 level 17.8 range 12.00-22pmol/l

20/7/22 TSH 1.9 serum free T4 level 16.2 blood test was at 11am

5/8/22 Serum Tsh level 3.2 Serum free T4 level 16.7 blood test 8.10am

Awaiting TBOAB ,TSH3 and Throid Peroxiadase antibodies.

im on folate,vitd,ppi,propanolol and allergy tablet per day (in case thats any relevance)

At AandE i think the TS3 level was low but other levels where ok.The dr said the results didnt make sense and to get my thyroid checked again.I did and all normal.

I think its my thyroid going off my symptoms as all my other vitamin levels are fine.My GP figure out whats wrong with me.

Sorry for such a long post but does anyone think its my thyroid?

Thanks

Georgie

50 Replies
SlowDragon profile image
SlowDragonAdministrator

Which came first ….propranolol or PPi

How much propranolol are you currently taking

Propranolol slows uptake and conversion of thyroid hormones and may also lower magnesium levels

pubmed.ncbi.nlm.nih.gov/168...

labtestsonline.org.uk/tests...

Drugs that may decrease PTH include cimetidine and propranolol.

rejuvagencenter.com/hypothy...

Propranolol could perhaps have lead to acid reflux

PPI are well known for leading to multiple vitamin deficiencies

gov.uk/drug-safety-update/p...

webmd.com/heartburn-gerd/ne...

pharmacytimes.com/publicati...

PPI and increased risk T2 diabetes

gut.bmj.com/content/early/2...

Iron Deficiency and PPI

medpagetoday.com/resource-c...

futurity.org/anemia-proton-...

onlinelibrary.wiley.com/doi...

sciencedirect.com/science/a...

GeorgeTD1710 profile image
GeorgeTD1710 in reply to SlowDragon

Ppi came first.I take 40mg.Been on this since november last year. Magnesium last month was 0.78 today its 0.94 range 0.7-1.00

SlowDragon profile image
SlowDragonAdministrator in reply to GeorgeTD1710

What’s the reason for propranolol?

GeorgeTD1710 profile image
GeorgeTD1710 in reply to SlowDragon

Think a bit of stress.Heart rate kept going high.Probably all the tests ive been through with no diagnosis of yet

shaws profile image
shawsAdministrator in reply to GeorgeTD1710

On levothyroxine (T4) alone, I had severe palpitations. These resolved when I was prescribed liothyronine (T3) and stopped T4. I know many doctors are reluctant to prescribe T3 as it is more expensive.

GeorgeTD1710 profile image
GeorgeTD1710 in reply to SlowDragon

Thanks for all the info.I will be discussing them with my GP.This may explain the vit deficiencies. Are thyroid results ok?

SlowDragon profile image
SlowDragonAdministrator in reply to GeorgeTD1710

Last one TSH over 3 suggests possibly thyroid is struggling

Propranolol will be affecting thyroid results so difficult to tell

If/when you stop propranolol it has to be weened off incredibly slowly. You can’t just stop it

Antibodies result important

20% of Hashimoto’s patients never have high thyroid antibodies

You might want ultrasound scan of thyroid if both antibodies are negative

GeorgeTD1710 profile image
GeorgeTD1710 in reply to SlowDragon

You have been so helpful thank you.Just looked up hashimotos.im never cold no weight gain. I asked for autobodies test after reading on here to see if it was my thyroid. My GP keeps saying its normal. They arent listening to me. What will the antibodies tell ? How do i convince my GP to send me for an ultrasound of my thyroid? So hard to tell if the vitamins is ppi ,whether its thyroid or b12 or both.Ive just ordered a active b12 test from medicheck to test the levels.Its all so complicated

SlowDragon profile image
SlowDragonAdministrator in reply to GeorgeTD1710

You would need to test antibodies privately if GP won’t

Medichecks or Blue horizon

If both antibodies are negative, consider getting (private) ultrasound scan of thyroid

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

GeorgeTD1710 profile image
GeorgeTD1710 in reply to SlowDragon

To get a private ultrasound in my area you need a referral letter from gp . Im awaiting on TBOAB and Thyroid peroxidase antibodies results are these the right tests?

SlowDragon profile image
SlowDragonAdministrator in reply to GeorgeTD1710

TPO = thyroid peroxidase antibodies

TG = thyroglobulin antibodies

NHS only tests TG antibodies if TPO are positive (above range)

Significant minority of Hashimoto’s patients only have high TG antibodies. So would need to test privately to get TG antibodies tested if TPO are negative

1 in 5 Hashimoto’s patients never have high antibodies

Diagnosis can be done by ultrasound scan

There are different ultrasound companies available around U.K.

GeorgeTD1710 profile image
GeorgeTD1710 in reply to SlowDragon

Ive had both those blood tests done last friday and TSH3. .I insisted with my GP just awaiting the results.Could i post the results on here when i get them please for advice ?

shaws profile image
shawsAdministrator in reply to GeorgeTD1710

Yes, you can post your results but open a new question so that it will be answered. Also put the ranges too of the results and that enables some members to give advice.

Munting profile image
Munting in reply to GeorgeTD1710

I’m convinced that ppi’s contributed to my vitamin deficiencies - I took it because I had bad reaction to some antibiotics, then three weeks later my body went into complete spasm. Weaned myself off it, then found out a year later I had a hiatus hernia so had to find another ppi that didn’t upset me. Was on it for 6 years until I got my hernia massaged down, but since I found out I had SIBO and now Hashimotos. For me, I know it’s probably chicken and egg about what came first really, and it can take an age to get sorted, but you will get there.

GeorgeTD1710 profile image
GeorgeTD1710 in reply to Munting

I have a hiatus hernia.Been on all the different brands over the years.Fuming as gp never monitored vit levels.Tried to reduce ppi to 20mg for a month couldnt do it had bad stomach more acid etc dont know how to get off them

Munting profile image
Munting in reply to GeorgeTD1710

I completely sympathise with you. Dr Google suggests that low stomach acid causes acid reflux - Vitamin C and Ginger would help with that. Probably also some digestive enzymes containing HCL too.

Munting profile image
Munting in reply to GeorgeTD1710

Also, my hernia was massaged down by an Osteopath - mine was only little and it took seconds for him to do luckily. I remember coming off the tablets wasn’t easy (my digestive system was completely out of whack) , but then my nutrients were deficient and little did I know I had SIBO and Hashimotos 😭😭😭.

GeorgeTD1710 profile image
GeorgeTD1710 in reply to Munting

I can see this taking ages to get diagnosed.Seeing gastro on the 2oth August.Ive had colonoscopy and upperendoscopy both normal. Prep stuff gavd ne upset tummy and other end for 2 weeks.Just got back to a bit of normality.He will probably just put it down to IBS.Anny suggestions of further tests i should ask for.Calprotectin levels raused twice at 107 and 115.

Munting profile image
Munting in reply to GeorgeTD1710

A lot of people with IBS actually have SIBO and you can have a breath test done for that on the NHS so it’s worth asking your gastro for one. If you do have it they will offer antibiotics but there are herbal remedies too but obviously the NHS won’t provide. You can do a breath test at home yourself but it obviously costs, and I’ve been lucky enough to be able to have the support of a Naturopath - I fell really I’ll when Covid started and had to wait 18 months to get the test done on the NHS, so I had to turn to support somewhere, and to be honest I don’t know what I’d have done without her because it’s her that said I might have thyroid problems too, and she was right.

GeorgeTD1710 profile image
GeorgeTD1710 in reply to Munting

Will ask about SIBO when i go to see him Thanks for that.My GP thinks im neurotic keep asking for tests.Lol

Burning sensation and pins and needles in muscles im adamant has to be thyroid or B12 as MS and rheumy conditions ruled out.Just dont know where to go from here

Munting profile image
Munting in reply to GeorgeTD1710

OMG! You sound just like me! The pins and needles absolutely kill me, then the spasms, the numbness, the wind and constipation and diarrhoea and trying to tell people about it, I’m sure they think I’m a weirdo. And, all the NHS kept saying was that it’s anxiety - nooo, the anxiety I did have was because of all the pain and misdiagnosis. Trying to tell them during a telephone appointment too just got me nowhere. I’m within range with my thyroid meds now (oral solution, which was a fight to get via the NHS but I got it) but that helped me tolerate more supplements, and I have literally just tried an Iron spray that is taking all the pain from the pins and needles away - so today is a GOOD day, and you will get there.

GeorgeTD1710 profile image
GeorgeTD1710 in reply to Munting

What cused the pins and needles your thyroid.What did you do to get treated?

Munting profile image
Munting in reply to GeorgeTD1710

I upped my thyroid medication (I was just within range but my endocrinologist agreed it could be better), treated the SIBO and the iron spray. But you also need good b vitamins, calcium and magnesium. Might be worth getting your liver checked checked out too, which is something your gastro could also do with a liver screen blood test.

GeorgeTD1710 profile image
GeorgeTD1710 in reply to Munting

I have fatty liver.Having a fibroscan next week so its being checked

Munting profile image
Munting in reply to GeorgeTD1710

Oh that’s good. Upping my thyroid meds helped with that. Hope all goes well.

GeorgeTD1710 profile image
GeorgeTD1710 in reply to Munting

Do you mean thyroid meds helped your liver?

Munting profile image
Munting in reply to GeorgeTD1710

Yes. The only thing I’d done before my liver recovered was increase my thyroid medication.

GeorgeTD1710 profile image
GeorgeTD1710 in reply to Munting

Is the medication for thyroid ok to take with fatty liver do you know.dies it affect ALT levels etc?

Munting profile image
Munting in reply to GeorgeTD1710

Well mine was ok.

Cornwaller profile image
Cornwaller

Hi, you have a lot going on! Specifically with regard to thyroid your last TSH looks high and your T4 is less than half way through the range. It would be super helpful to get hold of your T3 result as this would complete the picture. A trial of thyroid medication might then be appropriate to see if it helps you.

Your b12 deficiency may or may not be controlled by three monthly B12 shots. See B12d.org for details. How low was your serum b12 before treatment?

I hope this is helpful.

GeorgeTD1710 profile image
GeorgeTD1710 in reply to Cornwaller

My b12 level was 50 so critically low.Was very ill .The results fall within the labs normal range. How do i get my gp to listen? Do thyroid meds affect the liver?

SlowDragon profile image
SlowDragonAdministrator in reply to GeorgeTD1710

Were you diagnosed with Pernicious Anaemia? Or “just” low B12…..possibly linked to long term PPI use

healthline.com/health/antit...

If you do have small amounts in your blood, it may be a sign of certain health problems, such as:

type 1 diabetes

pernicious anemia, a drop in red blood cells caused by a vitamin B-12 deficiency

collagen vascular diseases, such as rheumatoid arthritis and scleroderma

thyroid cancer

If you have high levels of antithyroglobulin antibodies in your blood, it may be a sign of serious autoimmune disorder, such as Graves’ disease or Hashimoto thyroiditis.

Are you taking any magnesium supplements?

Both PPI and propranolol tend to lower magnesium

GeorgeTD1710 profile image
GeorgeTD1710 in reply to SlowDragon

This is where i get confused.All my FBC is normal.Intristic factor negative. Just been to see Rheumy. Rheumatoid etc all ruled out.sugar level normal,Had all immoglobulins checked in april as a part of liver autobodies check all normal.ENA panel anti ccp normal, magnesium level last month was 0.78 now 0.94 .

SlowDragon profile image
SlowDragonAdministrator in reply to GeorgeTD1710

Magnesium test is unreliable. It only tests magnesium in blood, not cells

ncbi.nlm.nih.gov/pmc/articl...

pubmed.ncbi.nlm.nih.gov/201...

drmyhill.co.uk/wiki/magnesi...

Ppi and magnesium

gov.uk/drug-safety-update/p...

Propranolol and magnesium

webmd.com/drugs/2/drug-2930...

GeorgeTD1710 profile image
GeorgeTD1710 in reply to SlowDragon

Ive just rung the doctors and antibody as TSH 3 not back yet. I have a face to face appointment tomorrow to assess my nerve pain,neck ,leg and back pain.Any suggestions on how i can tackle the possibility of my symptoms being either my thyroid or that im still B12 deficient? What blood test is for active magnesium?

SlowDragon profile image
SlowDragonAdministrator in reply to GeorgeTD1710

NHS don’t treat thyroid unless TSH is over 5 on two separate occasions

Starting levothyroxine - flow chart

gps.northcentrallondonccg.n...

How long have you been on B12 injections

How frequently are you getting injections

How low was folate

When were you prescribed folic acid

How low was vitamin D at diagnosis

How much vitamin D are you currently taking

Vitamin D levels need testing twice year

You won’t get vitamin D tested more than once every 2 years on NHS (and even that’s unlikely)

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Have you had full iron panel test including ferritin

You won’t get any other magnesium test on NHS.

If taking vitamin D supplements, it’s generally recommended to also supplement magnesium

GeorgeTD1710 profile image
GeorgeTD1710 in reply to SlowDragon

Been on B12 injections since 2016 every 3 months.Folate was just under normal range around 3.5 range (3.9 -26.8) Im on 5mg for 3 months.Last test folate was 16.3 last month.Gp will retest when tablets ended .Vit D level was 40 so bottom of normal range 50.He put me on vit d 20,000 IU 1 dsily fir 15 days,then 1 tablet per month.My ferritin continuously been dropping now at 65.Not had full iron panel done since jan when my ferritin level was129. This test was normal at the time

GeorgeTD1710 profile image
GeorgeTD1710 in reply to GeorgeTD1710

My TSH is 3.2 and if my GP says he wont treat unless its over 5 what do i do? Does it need monitoring ? No idea how to approach this tomorrow with my GP.

shaws profile image
shawsAdministrator

Did your doctor diagnose pernicious anaemia? I have this condition and now get monthly injections of B12 and I am aware that the usual is every three months.

If we have one autoimmune disease we can develop others.

GeorgeTD1710 profile image
GeorgeTD1710 in reply to shaws

IF keeps coming back negative so hes just now fobbing me off

GeorgeTD1710 profile image
GeorgeTD1710 in reply to shaws

Dr put B12 deficiency diwn to long term PPI use and at the time had 2 lots of antibiotics.B12 deficiency then started

Cornwaller profile image
Cornwaller

Could I ask... did you get b12 shots every other day for two weeks or until symptom improvement stops.

To quote NICE or Google NICE b12 deficiency "....

How should I treat a person with vitamin B12 deficiency anaemia?

For people with neurological involvement

Seek urgent specialist advice from a neurologist and/or haematologist.

Ideally, management should be guided by a specialist, but if specialist advice is not immediately available, consider the following:

Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months.

For people with no neurological involvement

Initially administer hydroxocobalamin 1 mg intramuscularly three times a week for 2 weeks.

The maintenance dose depends on whether the deficiency is diet related or not.

...."

Your description suggests neurological involvement and therefore the first path should have been followed.

Best wishes.

GeorgeTD1710 profile image
GeorgeTD1710 in reply to Cornwaller

Ive seen this guidance.I only got 6 loading injections then every 3 months.Any suggestions of what i request from my GP now?

Cornwaller profile image
Cornwaller in reply to GeorgeTD1710

Maybe to see a specialist re b12 as suggested in NICE guidelines. Secondly a full thyroid panel including T3. Good luck.

shaws profile image
shawsAdministrator

I have pernicious anaemia (as did my mother who died when her GP stopped her B12 injections and she developed stomach cancer). My GP told me I can have as many B12 injections as I feel I need and I get one each month now.

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

GeorgeTD1710 profile image
GeorgeTD1710 in reply to shaws

So sorry about your mum. Im fighting a battle with my GP.He stating i have health anxiety as my tests are normal errrr no.

They didnt follow NICE guidance initially.Had burning skin since diagnosis never feel the cold.

The least he can do is offer them 2 monthly.Just donf know what to say to him Ive ordered the active B12 test from medicheck. Hopefully if its low he will do something

shaws profile image
shawsAdministrator in reply to GeorgeTD1710

Doctors can rile us - one told me that T3 converts to T4! I said 'I'm sorry doctor but you are wrong'.

One of my GPs told me I can have as many B12 injections as I feel I need. I get one each month now.

GeorgeTD1710 profile image
GeorgeTD1710 in reply to shaws

I havent really got the knowledge to do that yet.All i keep getting told is Serum B12 is normal and so is my thyroid.

shaws profile image
shawsAdministrator in reply to GeorgeTD1710

George, always get a print-out of your blood test results and post them on a new question.

I am assuming that you are aware that when you are getting your blood tested for thyroid hormones that you follow this method:-

Always make the earliest appointment - even if you make it weeks ahead.

Don't take thyroid hormones before test (it is also a fasting test and a) take them afterwards.

I know one of my GPs has absolutely no clue about anything to do with the thyroid gland and its dysfunctions. I told him when he spoke to me last 'I am sorry doctor but you are wrong'!.

GeorgeTD1710 profile image
GeorgeTD1710 in reply to shaws

Ive posted results on this post and put the times of my last 2 thyroid tests.Worried now as my ferritin levels are reducing quite fast from 141 to 65

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