Help and advise needed

[Ks900]

Hi I am new to this group, but I am a member of the Pernicious anaemia forum.

I have had Pernicious anaemia for many years now and rely on my B12 jab. Which keeps me on track but the last couple of years I have developed more problematic symptoms.

My doctors has tested for thyroid a few times over the past few years, but my results always come back okay. Although they only carry out TS4 and TSH.

I still struggle with extreme fatigue, I have trouble with weight management , aching bones and joints I am constantly cold ( I sleep with and electric blanket every night) I seem to have flair ups when my eyes and ankles become very swollen. My hair is brittle and my skin is dry and I have terrible brain fog and memory recall issues.i know some of these symptoms could be B12 and menopause related but both are been treated I have monthly B12 jabs.

I am just turned 50 and my Dr has put me on HRT thinking this would help with mood swings and irregular periods . It has helped slightly but I still on the whole never feel well.iI am convinced they are missing something with my thyroid.

I have cut out gluten in an attempt to help with my aches and pains. I eat a very healthy diet.

I am so fed up with being fobbed off that I have sent off for a full range of thyroid checks with Medichecks.

Am I missing something obvious? Any advise would be helpful I am feeling pretty helpless and frustrated. I long to not feel exhausted and human again.

Thanks Karen

[greygoose]

'ok' is meaningless. Do you have the actual numbers? No-one can help you unless we see the results AND the ranges. What your doctor thinks is OK, probably isn't at all. I think the obvious - or not so obvious - thing that you're missing is probably the fact that your doctor knows nothing about thyroid and can't interpret the results.

[Ks900 in reply to greygoose]

Thankyou for your reply, my Dr didn’t give me the numbers and I suppose I was so deflated and frustrated I just didn’t have the fight I’m me.

As soon as I have my new results I will share on here .

Thanks again x

[greygoose in reply to Ks900]

Doctors don't tend to give patients their results. They tend it think it's none of their business! But the law says you're entitled to them. So, next time, ask the receptionist for a print-out.

[Ks900 in reply to greygoose]

Hi All

Thankyou for your support last week. I have finally got my results back, and they seem okay and have been told that they are fine.However you guys seem so knowledgeable I would really appreciate your opinion.

TSH 2.85

Free T3 5.21

Free Thyroxine 15.2

Thyroglobulin <10

Thyroid peroxidase antibodies <9

I am once again really confused as my symptoms remain constant. I guess it’s a continued process of elimination. This is o frustrating I just want to feel well and get some energy back.

Thanks

[greygoose in reply to Ks900]

Hi Ks900,

You have replied to me, so 'all' won't see it, only I will see it. I would suggest you start a new thread so that more people see it.

And, in that new thread, add the ranges. I cannot stress how important that is. However, just glancing at your TSH, I can see that your results are not OK. Your thyroid is struggling. Your FT4/3 may not look too bad but it's taking a lot of stimulation from the TSH to get them to those levels. You're not quite hypo, yet, but getting there. However, 99.9% of UK doctors will tell you there's nothing wrong with you because for them, unless your TSH is over 10, they won't believe there's anything wrong with you. They're that ignorant, I'm afraid.

[Ks900 in reply to greygoose]

Thanks for this I realised last that I had just replied to you.so I started a new thread at least I thought I had ! I will check again.

To hear you feedback makes me feel I’m not losing my mind.

So I think this is where my battle begins trying to get my GP to understand.

Any advise on this would be really helpful.

[greygoose in reply to Ks900]

No, no new thread.

[Ks900 in reply to greygoose]

I’m not sure what I have done I Have posted a new question? I not sure if I have done this correctly x

[greygoose in reply to Ks900]

Yes, there's a new thread now. But, you still haven't put the ranges, so no-one will be able to help you with your results, I'm afraid.

[Ks900 in reply to greygoose]

I will add them now . Thank you so much x

[greygoose in reply to Ks900]

You're welcome.

[Ks900 in reply to greygoose]

I have added my results ! Fingers crossed x

[Marz]

PA is auto-immune and it is quite possible you may have Hashimotos - auto-immune thyroiditis. It is the most common thyroid issue globally.

The NHS very rarely do the correct testing and thousands here have their tests done privately through Thyroid UK. Click onto link below for more information about Private Testing kits sent to your home.

thyroiduk.org

Medichecks have Special Offers which are flagged up here on a post on Thursdays - so check your News Feed !

As you are having B12 injections your B12 test result will be skewed but is included in the Medichecks Ultravit Testing bundle. Folate - Ferritin and VitD are important tests that are included along with TSH - FT4 - FT3 and Anti-TPO and Anti-Tg. The last two are anti-body tests.

No need to include GP comments with your test results - better to return here with your results and ranges in a new post for helpful comments.

My personal opinion about HRT is that it is seen as a quick fix by medics when often the underlying cause of symptoms is rarely thoroughly investigated - eg thyroid. The correct testing is rarely carried out and then results rarely understood - sigh !

[greygoose in reply to Marz]

Entirely agree with you on all points!

[Ks900 in reply to Marz]

Thanks you Marz for your prompt reply. I ordered my test Yesterday afternoon I just ordered the full thyroid as I guessed the B12 would be skewed with my Regular B12 jabs.

I feel so much better for having taken control and ordered the test .

I agree with you about the HRT. I find it so frustrating. I have even been told I should try antidepressants , I think this is another quick fix if all else fails at least I’m off their back for a while. Of course I didn’t accept them I’m not depressed , although the years of being fobbed off is enough to make anyone depressed.

I didn’t mention on my post earlier another side effect I keep having is my heart seems to beat irregularly .

It’s not a gentle Flutter but it feels my heart is jumping .

I shall have a good read up on hashimoto disease and fingers crossed for the results.

I will share them in this forum.

Thanks again Marz

[Marz in reply to Ks900]

It was an irregular heartbeat that took me to my GP in Crete back in 2005. After checking my heart with an ECG she tested for thyroid which included ALL the above mentioned thyroid tests - scan arranged same day and typed results within 2 days ! Hashimotos was diagnosed and my journey began !

Too little thyroid hormone can affect the heart as can too much. Also low Iron - Ferritin - Folate - VitD can be involved in heart health. Low levels often caused by mal-absorption when Hypo.

As you have B12 injections are you also taking Folate/Folic Acid/B9 ? Any other supplements ?

Iron transports oxygen around the body to all organs within red blood cells. So if iron is low - oxygen is low - detected by the heart which then beats harder in an attempt to create more oxygen ! Simply put 😷

Do add Folate - Ferritin - VitD to your test bundle !

[Batty1 in reply to Ks900]

I wonder if you developed and arthritis flare.

[Ks900 in reply to Batty1]

I think I may have ! Is this connected to hashimoto?

[Batty1 in reply to Ks900]

From what I read yes ... I developed psoriatic arthritis after thyroidectomy so I’m a believer!

[SlowDragon Administrator]

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

As you only ordered thyroid testing

Ask GP to test vitamin D, folate and ferritin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

Come back with new post once you get results

[Ks900 in reply to SlowDragon]

Thank you for your comprehensive reply.

I will get my folate and vitamin levels checked once my surgery is back up and taking appointments .And thanks so much for the tip on the testing time.

I will post my results when I have them.

Thanks again x

[Marz in reply to Ks900]

Surgeries are loathe to test VitD and it can be a battle for the others too. Add them to your Private Thyroid tests - and save yourself the stress of battling 🌻

[Banjogirl]

F

[madge1979]

I was just reading through this thread and I'm amazed at the response to KS900.

You've come to the right place for Help with such great, generous spirited people to help you .. i was going to give advice too but .. it's All been said by those who are better informed .. Than I.

I will however say that in my Family .. many of us have Thyroid diseases of one kind or another .. mine is Graves .. but those who have Pernicious Anaemia also have Hashimotos .

I hope you get those All important Numbers so you get the best help on here ..

Best of Luck

Luv Mx🌹

[Ks900]

Hi All

Thankyou for your support last week. I have finally got my results back, and they seem okay and have been told that they are fine.However you guys seem so knowledgeable I would really appreciate your opinion.

TSH 2.85

Free T3 5.21

Free Thyroxine 15.2

Thyroglobulin <10

Thyroid peroxidase antibodies <9

I am once again really confused as my symptoms remain constant. I guess it’s a continued process of elimination. This is o frustrating I just want to feel well and get some energy back.

Thanks