Long term -confused - Thyroid & pain in neck?

[ukred]

Hi, I'll try and be brief.

It's been over 3yrs since I thought I had a thyroid problem. I was fobbed off with antidepressants and it took me years to get off them. I am still having problems and I know it is not just anxiety!

I suffer with DPDR - dissociation. I feel spaced out often and disconnected. I have no idea if it is just anxiety or has physical causes. Anyway, in the last few years I have been testing my Thyroid with medichecks and it wavers between about 5 and 2. I haven't felt physically well for a while. I've lost my eyebrows, most of my bodily hair and big chunks from my head. I'm 66 so have no idea if this is just 'ageing'???

So, a month ago I think I got Covid. We have no tests now so hard to know but had it before and it was similar. Couldn't get out of bed for virtually a week. Midway through this I developed horrific pain in the front of my neck radiating up to my ears. One night it was so excrutiatingly painful I was walking around our housing estate at 2.30am crying in pain. I just had to get out. Anyway, got through that and then a few days ago I started to get the same pain again - always around the lymph glands but lower too and this time low grade aching in shoulders and chest.

I have decided to ring and try and get a GP appointment on Tuesday. I just don't know what this is. I have ongoing anxiety - hence the DPDR but things seem to be becoming physical now. My last thyroid blood test was with medichecks (it's like getting blood out of a stone through NHS). in December last year and were:

TSH = 2.57 range 0.27-4.2

Free T3 = 5 range 3.1-6.8

Free Thyroxine =18.4 range 12-22

This was part of a well woman test rather than their thyroid test as I am desperately seeking answers.

I just wondered if your thyroid problems have ever caused pain? Is this a thing? I'm trying to stock up on info before I see GP.

[SlowDragon Administrator]

Some people do report pain

More common a feeling of lump in throat

Or acid reflux and/or bloating and IBS

Have you ever tested TPO and TG thyroid antibodies

These both need testing at least once

Also extremely important to test vitamin D, folate, ferritin and B12

what vitamin supplements are you currently taking

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test

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 all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[ukred in reply to SlowDragon]

Thank you so much for getting back to me. Yes, my vitamins were optimal apart from B12 which was in range but low and I have addressed that - it was my laziness because I'm vegan and need to make sure I never miss a supplement. It's over 6mths since that test and I have been heavily supplementing and my MCV has dropped on a recent NHS basic test so I know its working. My Ferritin level was more on the high side. I also take Magnesium, a multivit and omega 3.

In a Nov 21 medichecks test my Thyroglobulin Antibodies were 11.6 in a range 0-115 and my Thyroid Peroxidase antibodies were less than 9 in a range 0-34

I'm going to make an appointment with the GP Tuesday and then depending what she says order another private blood test.

[SlowDragon Administrator in reply to ukred]

How long have you been vegan

Are you testing FULL iron panel

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

Stop iron supplements 5-7 days before testing

Medichecks iron panel test

medichecks.com/products/iro...

As a vegan it’s important to consider iodine

Vegan diet is extremely low in iodine

Does your supplement contain iodine

Perhaps look at testing iodine levels

Genova Diagnostics for iodine test

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

Click on "Read the list of available tests" and on page 3 of the pdf you'll see

Urine Iodine Test:

Specimen requirements: Urine

Cost: £76

Order Code: END25

Turnaround time: 5 - 10 days

Iodine is an essential trace element, vital for healthy thyroid function. Adequate levels are required to enable the production of T3 and T4 thyroid hormones, whilst also being required in other areas of health.

Deficiencies can lead to impaired heat and energy production, mental function and slow metabolism. Urine iodine is one of the best measures of iodine status. This test is not performed as a loading test, but can be used to establish existing levels or to monitor iodine supplementation.

[ukred in reply to SlowDragon]

Thanks again. Yes, full iron profile, medichecks are quite good for that on each of their tests. I eat a lot of green, iron rich foods and never had a low iron test. I've been vegan about 10-12 years and was vegetarian for about 30yrs before that. I do try to eat healthy meals and I'm lucky because I love veg and beans and legumes and fruit so it's no hardship. I have been rubbish with the B12 though. That has caused a problem and I'm trying to correct that and I've learned my lesson!

Thanks for the Iodine advice - have always been a bit scared of it TBH but it does make sense. My Omega3 is seaplant based and I'm not sure if that helps but I will look into that thank you.

[SlowDragon Administrator in reply to ukred]

I have been rubbish with the B12 though. That has caused a problem and I'm trying to correct that and I've learned my lesson!

Are you now taking daily separate B12 and a separate daily vitamin B complex

academic.oup.com/nutritionr...

The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency.

Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement

A week later add a separate vitamin B Complex 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 at least few times a week or daily

Highly effective B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

healthline.com/nutrition/fo...

B vitamins best taken after breakfast

Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose

Post discussing different B complex

healthunlocked.com/thyroidu...

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

[DippyDame]

Strongly advise you have a Full Thyroid Test as SlowDragon describes to include...

TSH, FT4, FT3, vit D, vit B12, folate, ferritin and thyroid antibodies TPO and Tg

Your TSH is high....ideally closer to 1

FT3 = 5 range 3.1-6.8 that is 51.35% through the reference range

FT4=18.4 range 12-22 that is 64% ditto

We aim to have both Frees roughly approaching 75% through the ref range

Your levels may be OK for some but I'd suggest they are too low for your wellbeing

Unfortunately medics thyroid knowledge is generally poor so they may take some convincing

Symptoms are an important part of diagnosis ( often overlooked by medics!) Tick your symptoms off on this list and use as evidence.....I think you'll recognise a number of symptoms

thyroiduk.org/signs-and-sym...

Low T3 can affect all or any part of the body. For good health every cell in the body must be flooded by T3 by way of an adequate supply.....I'd suggest you need replacement thyroid hormone levothyroxine which usually converts to T3.

Some people have poor T4 to T3 conversion and need to add a little T3.....too soon to go there!

Many years ago before I was dignosed I experienced that spaced out feeling and thought it was due to a neck injury ( whiplash / RTA).....now I think it was also low T3. I would find myself talking to someone and then they appeared to be floating away from me.

I've just looked up DPDR.... Interesting... never heard of it! It's worth noting it's a disorder not a disease. I don't think they really know the cause....just a problem with various symptoms that need investigating. If they don't have an answer they often fall back on anxiety, which I see as a result of something else being wrong....not a cause

It describes how I used to feel....it's scary. It can still happen less intently if my T3 level drops. I had several weeks of traction as treatment but that was about 40 years ago....and my (rare) thyroid condition had yet to be discovered.

Pain I've never really experienced , only mild discomfort but it can happen

I'm not in a position to diagnose but based on my own experience I might suggest that you are hypothyroid and would benefit from replacement hormone

The results of a full test under advised protocol will reveal more, that combined with a complete list of symptoms should alert a GP to diagnose hypothyroidism

Come back with labs for advice

Sorry....bit of a rant but hope something resonates.

[ukred in reply to DippyDame]

Thank you so much for taking time to reply. You have given me much food for thought and I will have a lot to go to my GP with now.

I've become a bit of an expert on DPDR! Not by choice, certainly... I have actually had a tendency to it since childhood....but only brief instances that came and went. In a nutshell, it's like horrifically seeing your child knocked down by a car. Everything kind of starts to go in slow motion and you are observing what's going on rather than being part of it. It's shock and DPDR is like a long drawn out version of that shock. It's an extreme reaction to anxiety and most people will have a taste of it in their lives. Unfortunately, for some of us, it happens easily when we are anxious. Our brains 'close off' reality to protect us. It's not really a disorder unless it's permanent and you lose touch with reality. It's just an extreme reaction to anxiety. It has been with me over 50% of the time for the last 3 years now and anti-depressants only made it worse. It gets worse when I'm tired too. I think I feel so strange in my body that it has kicked off underlying anxiety....and there I go...like the puffer fish in Finding Nemo.....floating above life! Some days it's nastier than others....

I will do everything you have said because there is definitely something going on and I'm sick of being fobbed off with an 'anxiety diagnosis'. I've lived with that all my life but this is something different and I think you can tell that yourself.

I'm just going to click on the link you gave me and run through the symptoms. I'm sure I'll come back to this thread a few times before I see the GP.

Thanks again

[DippyDame in reply to ukred]

It's worth bearing in mind that the brain needs a great deal of T3....often missed by medics but found in scientific papers....and anxiety is a text book symptom of low T3!

If your test was done under advised protocol and therefore accurate your T4 to T3 conversion is a tad impaired

We get tired when our metabolism runs low....and guess what! T3 controls the body's metabolism..

If my T3 is low I flop!

I recognise much of what you say and have spent decades pretending to be fine when I wasn't so I fully sympathise.

My bio might be of interest

The journey to better health starts here!

We're all herre to help.....just ask!

[ukred in reply to DippyDame]

Thank you. I'll read through it.

[quicklyinsignificant in reply to ukred]

Hi @ukred,

I quickly read your posts and my Mum also suffered with unbearable neck pain and she was hospitalised for it and then foot pain.

She is doing much better now and had just about every test under the sun at Hospital. They originally thought she had bacterial meningitus and wanted to do a spinal tap because she had conjuctivitus at the same time.

The advice on this forum is great. You did the right thing posting.

We've found the GPs, Doctors at the Hospital and Endos have little-to-no knowledge about thyroid disorders. You need to become very knowledgeable about research your symptoms, join forums and learn as much as you can, on your path to getting better. Mum's TSH was 5.9 and the Doctor on call said no weekend intervention was necessary.

[ukred in reply to quicklyinsignificant]

Thanks for this. I'm going to ask for an appointment tomorrow. I hope your mum gets completely well soon X

[annnsandell]

This may or may not be anything to do with your Thyroid but certainly it all needs investigating properly. Do you have any swelling around your thyroid, a goitre? In any event can I suggest you make some comprehensive notes including timelines and take them to your GP and thus avoid the 'anxiety diagnosis'. This will be hard for your GP to ignore. Good luck.

[ukred in reply to annnsandell]

Thank you. I'm going to ring for an appointment tomorrow. I've now got info on here and listed my symptoms and timeline.

[Litatamon]

I want to put out that just because someone is vegetarian or vegan does not mean that any b12 deficiency is absolutely diet-related. Ie. Supplement with pills, okay all done!

Of course most of the time it is but a person who is vegan or vegetarian can have Pernicious Anemia or another reason for an absorption issue.

Do not expect any doctor to understand b12 deficiency. Sounds absurd but it is true. They just don't get the hours of study in this area.

Also, b12 testing numbers can rise with pills, but not reach the cellular level. If you do happen to have an absorption issue - shots would be a better choice.

Your pain sounded familiar. I had b12 deficiency & extremely low vitamin d deficiency at the same time. And it alleviated, so it definitely was one of those for me. I also had multinodular goitre but I believe it alleviated before my thyroidectomy.

When I have more time I am going to come back and leave some helpful links for you. If I have not by the end of the day - probably morning for you - please remind me. 🌺

All the best.

youtu.be/QqjyAeOLyKM?si=9rP...(Not working as expected?)

stichtingb12tekort.nl/engli...

stichtingb12tekort.nl/engli...

stichtingb12tekort.nl/engli...

[ukred in reply to Litatamon]

Thank you so much for this and any links you may put up. 3yrs ago one of my original thoughts were that it may be my thyroid but I kept getting fobbed off. So I looked into B12 deficiency because to be fair I was really lax over the supplements. So I have really researched B12d. Read the 'bibles' on it and joined the groups. I am pretty sure I had it as medichecks confirmed it was quite low and I had a high MCV. I took the intrinsic factor test even though I know its not that accurate and that was fine. I used sublingual and tablet form B12 (even tried patches) and within 3mths my MCV went from almost 100 to 91 so I took that as showing I had absorbed. I'm still not well and I know B12d can take years to resolve but this neck pain brought me straight back here because I was never convinced there was nothing wrong with my thyroid. Someone further up posted a link to a symptom checker and I have ticked most of the symptoms of BOTH hypothyroid AND hyperthyroid! So I'm not sure what's happening there. It's academic really as I know my GP won't do anything unless I'm over 10! But I am going to look into an iodine test as someone else advised. It has cost me a fortune in tests and it took me over two and a half years to get off the last antidepressant they gave me. I stuck it out for a year but by the end they made my legs ache so much I couldn't walk! I'm sick of being 'experimented on' I just wish someone could tell me what's wrong. Thanks again

[Litatamon in reply to ukred]

Love sent to you. I know how frustrating & hard it is when there are multiple things going on at the same time. 🌺

[Litatamon in reply to Litatamon]

Links added, might not be new information for you since I can see that you are already informed.

But just in case.

If you have not seen the video, do watch. Tons of great information.

The other links I love because they are concise with medical footnotes.

[Popeye44]

I would strongly suggest that if you experience this pain again you go immediately to A&E. Those symptoms of pain in the neck, shoulders and chest area can be symptoms of a heart problem and need investing to make sure they are not.