Totally confused and fed up: Hi. I've stumbled... - Thyroid UK

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Totally confused and fed up

Flossie-theBigSearch profile image

Hi. I've stumbled across this page and realised that you guys know more about thyroid - or maybe care more about it than my doctors combined. I'm looking for some advice...

I have been backwards and forwards to the Gp for 2 years now, blood test after blood test and the answers are always disjointed. In that, each result is looked at on its own and not alongside every symptom that I have had for years ( dry skin, hair loss, brittle nails, fatigue, brain fog, constipation, itchiness, not sleeping, aches in joints...) I have finally cracked and asked for print outs of my results. I seem to have had every test under the sun except T3 (which is blank on each one). In a nutshell, my free T4 is 15.9 ish - normal range. My TSH is 1.46 - normal range, my 'se thyroid peroxidase Ab conc' is 104! The normal range for this is under 34 I'm told.

Add an elevated cholesterol, kidneys only working at 52% and high blood sugars. Mr Google tells me Hashimoto's. Which my doctor seems to ignore when I have asked about it. My family history (females on my mother's side) all had underactive thyroids. Please help me with any advice you can give. At the end of my (very long) tether!!

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Flossie-theBigSearch
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14 Replies
knitwitty profile image
knitwitty

Welcome to the forum Flossie.

If you have Hashimoto's ( an autoimmune condition where your own body attacks itself ) , which you level of TPO antibodies suggest , it's likely that you thyroid gland is slowly being destroyed.

It is really useful if you can include the ranges with your results as the ranges can differ from lab to lab, and it helps all the people who come along to comment to see where you are in the range.

The range of symptoms you are exhibiting would certainly suggest to me that you are suffering from hypothyroidism but you might have a struggle convincing your GP as your TSH is not very high and your T4 is in range, however, saying that I would suggest that you get a full thyroid blood test to get a fuller picture of what is going on. It may be that your T3 is very low which would explain why you are feeling so unwell.

Medichecks and Blue Horizon are two companies that I have used in the past and they are both good. You will need to make sure the following are all tested at the same time and that you do the blood test first thing in the morning before you eat or drink anything other than water.

TSH, Free T4 and Free T3,TPO and Tg antibodies, and the following nutrient levels as they are needed for good thyroid health and being low in them can mask hypothyroid symptoms. Ferritin, Folate Vit B12 and Vit D.

Medichecks often have special offers on their thyroid tests on Thursdays so maybe check them out tomorrow.

I'm sure some of the more knowledgable contributors will be along to give you some more information.

Keep coming back to ask for guidance , everyone on here is really helpful and generous in giving of their time to help thyroid sufferers.

Good luck. :)

Flossie-theBigSearch profile image
Flossie-theBigSearch in reply to knitwitty

Thank you! I have been reading other posts and realised I have not given enough information! I was honestly reaching the stage tonight were I could just scream - which is not like me at all!The ranges I have are: free T3 - ( this is how it is recorded on all 3 print outs I have)

free T4 16.5 (12-22) - not fasting. and free T4 15.9 (12-22) fasting.

TSH 1.31 (0.27-4.20) and TSH 1.46 (0.27-4.20) fasting.

These test were 6 months apart last year and the antibody test did not feature.

The most recent tests (Mar 2021):

T3 -

free T4 - 15.9 (12-22)

TSH 1.42 (0.27-4.20)

and thyroid perodoxiase 104 (<34)

These were fasting tests although I decided that myself as doctor said it wasn't required..

I also have ferritin 106 (13-150)

Folate vit B12 - normal and broken down into serum folate 5 (3.89-26.80)

and serum vit B12 660 (191-663.00)

My Vit D does not seem to be on any of the print outs. I know it had been very low some years ago but from memory, I was told it was 'normal' recently. I guess I'll have to check with them again.

I should also add that I'm early 50's and had a total hysterectomy /everything removed 10 years ago. The HRT did nothing for me and I just resigned myself to the symptoms of that for a while. I then had recurrent UTI's and finally, Viral Meningitis, which I was told was as a result of zero estrogen and the antibiotics for infections battering my immune system. Not sure if this helps any? I have put on weight despite trying several 'diets' which are more like healthy eating and which have worked previously - less carbs, very little sugar, more exercise (when I can get the pain under control). The weight is all lower belly - isn't that hormonal?

I am so grateful for your advice. Everything I have read on here makes sense and you guys really know your stuff and have an interest. That makes some difference!!

fuchsia-pink profile image
fuchsia-pink

Welcome to the forum. Are you on thyroid meds? Can you add the lab range for the free T4 results (these vary from lab to lab)

Can you treat yourself to FULL testing? - that means TSH, free T4, free T3 and key nutrients - ferritin, folate, vit D and B12. I suspect you've never had the nutrients done and some of your symptoms suggest these may be low ...

If your GP won't do all of these, you will see lots of posts here about private tests - there are discounts available on the main Thyroid UK site.

Always have a fasting, early morning blood draw, when TSH is highest, with 24 hours from your previous dose of levo - if you're on levo (take the next one afterwards) - and stop any supplements containing biotin a week before. Post the results [and related lab ranges] and the lovely people here will help you to understand them x

Flossie-theBigSearch profile image
Flossie-theBigSearch in reply to fuchsia-pink

Hi Fushia Pink.Thank you! I have added some more info to the previous reply - with ranges etc.

I am not on any medication. The furthest I have got with my Gp is that they will review it 'in a while and that I will 'probably need something later on. This was first said 2 years ago and since then none of the doctors has admitted there is any possibility of thyroid problems.

I am going to look into getting a full test privately. I think I have reached the limit of how many ways I can suggest this to my doctors. I do not take any supplements currently as I was told not to as my kidney function id struggling and this would make it worse. Again, a locum doctor who clearly had not even read my more recent notes!! I am also trying to avoid painkillers and anti-inflammatories for the same reasons. I am struggling...

I'm so grateful for all this advice, and to know I'm not just being a drama queen and whinging.

Maybe I am !!

knitwitty profile image
knitwitty in reply to Flossie-theBigSearch

Please don't think you're being a drama queen , so many of us on here have been dismissed by our doctors, they just don't seem to have enough knowledge regarding thyroid disorders and they rely on the TSH blood test result to dismiss us if we fall anywhere in their ridiculous range.I have read on here some time back that with Hashimoto's it is often prudent to initiate thyroid medication before the thyroid is completely destroyed.

As your own immune system attacks the thyroid a little more is destroyed with each attack until you have very little ability to produce thyroid hormones yourself and you become overtly hypothyroid and more and more unwell.

Following these attacks you may have a brief period of hyperthyroid like symptoms because following an attack your thyroid dumps an excess of thyroid hormone into your system, it is not true hyperthyroidism because you quickly revert to a hypothyroid status.

You need to be on the lookout for this happening because if a doctor sees hyperthyroid type results they may assume you have hyperthyroidism , this is what my first doctor suggested was my problem because of my over range blood test results, however they rapidly swung in the opposite direction.

As SlowDragon suggests ask for a coeliac blood test , as that is also an autoimmune condition, however if you don't have coeliac it is worth going completely gluten free for a few months to see if that helps you. Since going ( strictly) gluten free I have managed to get my antibodies down from around 450 to single figures and they stay that way if I avoid gluten completely. I'm not a coeliac but I think it has helped me to feel better .

I hope you get some answers via the private testing , and keep coming back and asking questions.

Knowledge is power. :)

Localhero profile image
Localhero in reply to Flossie-theBigSearch

Please don’t think you’re being a drama queen, Flossie-theBigSearch

I think one of the things so many of us have struggled with here is not being taken seriously by the medical profession. When they do not treat us with the seriousness we deserve, we end up doubting ourselves and feeling that the problem must somehow lie with us. Which over time becomes incredibly demoralising.

I’ve totally been there and totally know you are not inventing things or just whinging!

knitwitty profile image
knitwitty in reply to Localhero

Agree completely with everything you have said. :)

Localhero profile image
Localhero in reply to knitwitty

Thank you ☺️

Flossie-theBigSearch profile image
Flossie-theBigSearch in reply to Localhero

Thank you localhero. Demoralising is exactly how this felt but all of you guys have been great. I'm usually a very chilled and calm person who solves problems for anyone who asks. I'm feeling frustrated that I can't solve this, and up until I found this forum it seemed there were no more roads to try. I really appreciate your willingness to share and advise. I'm going to get organised again with renewed hope! ☺

Localhero profile image
Localhero in reply to Flossie-theBigSearch

Fantastic. It may take time and that’s par for the course. Hopefully now you’ve found this forum it’ll help you short circuit things a little. Whatever you do, don’t give up hope, keep coming back to the forum to post, read and comment. You’ll find a way through this!

Bluespots profile image
Bluespots in reply to Flossie-theBigSearch

You are not being a drama Queen at all. Took me six years to get to the bottom of my stuff. Getting my own tests done was the clincher, then showed those to the GP.....also if you have thyroid issues likely you are short of vit D. Helps with pain also.

SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

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

Request coeliac blood test done too

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

Ask GP to test vitamin 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)

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 antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

Bellazzurra profile image
Bellazzurra

Dear Flossie-theBigSearch, I’m happy you’ve found this forum - you’ve come to the right place! There are lots of great answers to your question already but to support what knitwitty said, look into gluten free diets. It’s not uncommon for people with autoimmune thyroid diseases to have Coeliac disease or some sort of gluten sensitivity. Hence, some people with Hashimoto’s Thyroiditis experience relief from their symptoms when they follow a gluten-free diet.

Bluespots profile image
Bluespots

High cholesterol for no obvious reason is a sign of thyroid issues. My cholesterol sorted itself out once I had adequate thyroid medication. I have Hashimoto, was so frustrated with GP, I had private testing done.....T3 etc and thyroid antibody test. All slowly getting a bit better now I know what to eat, correct Levy etc. Good luck.

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