Thyroid UK

Advice please

Hello, I am new. I have symptoms which I think are connected to my thyroid? Please see below timeline.

2012 - front of neck swelled up, looked like I was wearing a Victorian ruff. Ultrasound on thyroid showed lymphatic involvement of submandibular glands and sublingual glands. Thyroid was vascular and enlarged.

2015 - ultrasound of thyroid done again, showing thyroid was hypoechoic, enlarged and had hot patches through it

2016 - underwent barium swallow and endoscopy for difficult swallowing. Diagnosis of possible reflux given. Sent away with Lansoprazole and painkillers. Voice sounded hoarse and squeaky.

Onto symptoms - dry flaky skin (like eczema) on fingers, eyelashes falling out, pins and needles, carpal tunnel in wrists, knee pain, weight gain without trying, memory loss, dizziness when standing, problems regulating blood sugar.

Dec 2017

TSH 114.5 (0.2 - 4.2)

FT4 8.3 (12 - 22)

FT3 2.2 (3.1 - 6.8)

TPO ANTIBODY 809.5 (<34)

TG ANTIBODY 1100 (<115)

Any of these show a thyroid problem?

Advice appreciated!

25 Replies
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You need to get some blood tests done. Ask your GP to do TSH, freeT4, FreeT3, TPO antibodies & TGab antibodies. Ask them to check vitamin D, B12 & iron whilst they are at it.

If they won't test, and they should, (if not start looking for a new GP) have a look at Medichecks website on Thursday (they do cheaper Thyroid offers on a Thursday) and get a basic TSH, FreeT4 & FreeT3 finger prick kit to start off. If they are on offer, it will be £29 for a kit to do all 3. Then post the results on HealthUnlocked. The tests will show you if your problems are related to your Thyroid (and they sound like they are likely to be)

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TSH 114.5 (0.2 - 4.2)

FT4 8.3 (12 - 22)

FT3 2.2 (3.1 - 6.8)

TPO ANTIBODY 809.5 (<34)

TG ANTIBODY 1100 (<115)

Any of these show a thyroid problem?

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Dec 2017

FERRITIN 25 (30 - 400)

FOLATE 4.2 (4.6 - 18.7)

VITAMIN B12 202 (190 - 900)

TOTAL OH VITAMIN D 26.6 (25 - 50 DEFICIENCY. SUPPLEMENTATION IS INDICATED) taking 800iu D3

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All these are terrible because of your un treated Hashimoto's

You need testing for Pernicious Anaemia before B12 injections.

Low folate - Folic acid supplements should not be started until after first B12 injection.

Vitamin D you need loading dose - basically high dose for few weeks

Look up your local CCG guidelines on vitamin D deficiency

eg Oxfordshire

oxfordshireccg.nhs.uk/profe...

Ferritin you need full iron panel and ferrous fumerate supplements prescribed- 2 or 3 times daily

Detailed supplements advice from SeasideSusie to low vitamins in this post

healthunlocked.com/thyroidu...

Read up as much as possible about Hashimoto's.

Starting here on this support forum and the home site Thyroid UK. NHS recommended support group

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Thanks yes I have iron deficiency anaemia as well

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Thanks for adding your results.

They certainly do show a thyroid problem. What did your GP have to say about those results? Have you been prescribed Levothyroxine? You should have been.

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No Levothyroxine prescribed at all. I requested the thyroid results at my surgery a few days after I had my blood taken and I didn't hear back about them. The printout states abnormal please call patient for emergency appointment to prescribe thyroid hormone replacement. The surgery had the right number for my phone and I had my phone on all day, no calls and no voicemail came through.

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Then you need to be proactive and make sure you get an appointment very soon. Unless you have any other health conditions they should start you on 50mcg Levo and retest in 5 or 6 weeks. It's likely you will need several dose increases after that. Make sure you take it on an empty stomach and don't eat or drink anything apart from water for an hour after. You need to get those vitamin levels up too, or your body won' be able to use the Levothyroxine properly. Others can offer better advice than me on that. The main thing for now is to get a gp appt pronto.

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I have only just collected the results today, so yes I am proactive in trying to find out what the hold up was. Thanks

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Great. Sounds like you are on the case. GP should be aiming to get your TSH back down to under 1.

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Ok I will call GP tomorrow and try to get this sorted.

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Make an urgent appointmentwith any GP at the surgery tomorrow

You are seriously hypothyroid with autoimmunethyroid disease also called Hashimoto's

Is thus the first time you had your Thyroid blood tests ever done?

Surely with all the scans you had blood tests in past?

If not that's seriously negligent

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These tests were done in DECEMBER and they haven't followed up with you??! That is outrageous. Your results clearly show you have a thyroid disorder and Hashimoto's (where the antibodies are involved) and your nutrient levels are poor too (as is very common with Hashimoto's). I'm tagging SeasideSusie greygoose and SlowDragon to give you some informed advice (I'm still trying to get my head round everything and am not there yet!)

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Yes that's correct. The GP surgery said they left me a voicemail and I knew they had the correct phone number however I had my phone on all day with no voicemail and no incoming calls. I went to the surgery today to see what the hold up was, not really expecting to get a printout clearly saying I need thyroid hormone replacement. They gave me a reason which was a nurse called and left a message. But, still nothing on my phone saying this happened. Completely baffled!

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I'm fuming on your behalf!

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I am that annoyed I could cry to be honest. :(

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oh god I know that feeling. Well, you'll get some really good advice here, and can start tackling it all. That's just horrendous of your surgery. I'm shocked!

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The people I tagged are really good ref the nutrients too. Your GP should be giving you assistance with these. Ferritin, for instance, needs to be at least 70 for thyroxine (your own or what you take as a medication) to work properly.

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Not much I can add to everything others have said. Kessha, you need to see your doctor as soon as possible, because all your results are dire. And don't let your doctor fob you off any any of them by saying they're 'only a little over/under-range'. They all need treating, including the nutrients.

The amount of D3 you have been given is too little, it will not raise your levels in a million years! I suggest you buy your own - have a look at some of SeasideSusie's responses to other in the same boat, to see the amount she suggests.

Your B12 is so low that your doctor should test for Pernicious Anemia before attempting any supplementation.

I very much doubt that you should be taking Lansoprazole. That is for people with high stomach acid. Your nutrient results say that you have low stomach acid, so Lansoparzole will just make things worse. The symptoms of high and low stomach acid are the same, therefore other symptoms - like low nutrients - should be taken into consideration before diagnosing and prescribing! I think you're going to have to be very firm with your doctor!

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You've had loads of great advice but I just wanted to send big hugs.... you must feel absolutely horrendous!!

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Thanks yes I feel awful

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Kessha I had awful experience with my gp surgery too they were not proactive. I had to ask for my blood tests report I had to learn myself ‘thanks to this site and support’ where I needed to be in my results inc vitamins levels I then had to be proactive and tell doctors what treatment I needed and I requested myself for blood tests every 6 weeks! 4 months later my levels are now where they need to be and I feel great . Just want to give you some reassurance you will get there! This forum is brilliant I don’t know what I would have done without the support and advice.. x

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Let us know us know when you get back from appointment what GP does and prescribes.

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Sounds like a goitre that's what happened to me (a long time ago now). Along with extreme tiredness. Your symptoms definitely sound like thyroid problems. I assume you are being treated for such?

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You need thyroxine asap. Your results indicate a thyroid problem and I'm surprised that your GP hasn't started you on thyroxine.

Karen

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