Thyroid UK

First post, hoping for some help/suggestions

Hi, I joined a little while ago but haven’t posted yet.

I hope it’s okay that my post is quite long? I have a question at the end but thought I’d write some history first.

I was officially diagnosed in March 2016 after five noticeable months of feeling absolutely dreadful. The first thing I noticed was dizziness/vertigo which started in November 2015. As time went on I had all manner of symptoms, I was back and forth at the GPs getting various blood tests and when I was too unwell my GP came to mine. My GP thought I had Glandular Fever even though the test for that came back negative. She pretty much gave up on me after promising to phone me once a week to see how I was and not doing so. It made me feel like some sort of hypochondriac.

Anyway, after much googling on my part I came across the Thyroid UK website and saw the list of symptoms, I think I pretty much had about 90% of them at that time. When I saw the “burning foot syndrome”, “loss of eyebrow hair” and “scalloped tongue” that pretty much clinched it for me. I managed to get an emergency appointment with a different GP at my surgery because I wanted to ask if with all the tests I’d had, had a thyroid test been amongst them. Unbelievably it was a “No”, so I said I’d like a test for that as I was pretty certain I was hypothyroid. That GP thought it was Fibromyalgia (which incidentally my rheumatologist had already diagnosed me with two months previously. I see a rheumy as I have Psoriatic Arthritis (diagnosed 15 years ago). They arranged for me to come back the next day (a Friday) for the test and on the following Monday I had a text to say “your results are back, make an appointment with your GP in the next two weeks”.

On the Wednesday I got another text simply saying “Myxedema, come in to the surgery today for a prescription” (50mcg Levo). My own GP then phoned me on the Thursday apologising profusely that she’d missed it and that she had spoken to an endocrinologist at my local hospital and that I needed to come back in to up the Levo to 75mcg and to book in and see her, to test whether it was auto-immune. I did, and it was Hashimoto’s. I’m not sure at what level but she did tell me my T4 was practically zero and my TSH was 150.

Anyway over the past 18 months I’ve been seeing an endo at Addenbrooke’s, Cambridge (different one every time) my last appointment was in July of this year, I’m due to go back in November.

My latest results are (July 2017):

TSH 0.35-5.50 mU/L 1.48

Free T4 10.0-19.8 pmol/L 20.6 (H)

I asked him why there was no T3 result and he said they hadn’t tested it that time but would in November.

So prior to that my results from February were:

TSH 0.35-5.50 mU/L 9.16

Free T4 10.0-19.8 pmol/L 21.0 (H)

Free T3 3.5-6.5 pmol/L 3.5

Also in July I had a B12 test done:

Serum vitamin B12 level 327 ng/L [211 - 911]

And a Vitamin D test:

Serum total 25-hydroxy vitamin D level 77.9 nmol/L

Although over the past 18 months I’ve generally improved from when I was at my worst. And although my results are the best they’ve been, I am feeling absolutely dreadful (I have definitely felt better at other times during this). I really feel like I’ve gone downhill again and I can barely get out of bed at the moment, I’m so fatigued all day and for the first time starting to feel a bit of depression creeping in, my brain feels like a complete fuzz ball. I also ache all over and and my joints are a lot more painful with numbness and tingling in my hands, though I think this is more to do with my arthritis. (I was diagnosed with clinical depression at the age of 13, I am 49 now but can honestly say since the age of 33 I haven’t really suffered with it to that degree since.)

I just don’t know what else to do now, and I was hoping that although my results are from a couple of months ago and acceptable to the endo if there is any clue there? I know there are some very knowledge people on here. I am now on a daily dose of 150mcg levothyroxine which I take in the morning. (Plus a multitude of other drugs because of my Asthma, weak bladder, Psoriatic Arthritis and Hypercholesterolaemia which I take at night.) I also take Vitamin D at night, 800IU.

Is there anything that I should be asking my endo next visit?

Thank you very much for taking the time to read this and I’m sorry it’s so long.

4 Replies
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As Hashimotos progresses the Thyroid packs up more.

Essential that vitamin D, folate ferritin and B12 are at good levels

Vitamin D needs to be around 100. Most with Hashimoto's need higher dose than 800iu

Just buy your own and test twice yearly

betteryou.com/vitamin-d-tes...

A good vitamin B complex would help - but remember to stop taking this 3-5 days before any blood tests as biotin can falsely affect test results

Ask for ferritin and folate to be tested

Plus how high are your antibodies ? To feel well the antibodies need to fall

If GP is unhelpful option to do private tests

thyroiduk.org.uk/tuk/testin...

Are you on strictly gluten free diet? It can really help reduce symptoms and slowly lower antibodies

Only 5% with Hashimoto's are diagnosed coeliac but over 80% find gluten free diet very beneficial or are actually gluten intolerant

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

chriskresser.com/why-changi...

amymyersmd.com/2017/02/3-im...

scdlifestyle.com/2014/08/th...

All advise gluten free as essential

Selenium supplements can also help

A good probiotic for improving bacteria

Apple cider vinegar for low stomach acid

What time you take Levo may help too

verywell.com/should-i-take-...

If after all that you might also consider DIO2 gene test. Not cheap at £120 but might reveal DNA issue

See Thyroid UK private tests from Regenerus

thyroiduk.org.uk/tuk/testin...

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Thank you so much for your response. I did have a ferritin test some time ago and I was apparently borderline for whether I needed Iron tabs but I was prescribed some anyway (can't remember my actual number). I don't take them now but yes I think another test for that and folate may be in order.

Am I right in thinking that my B12 level should be more like 500?

I'm not sure how high my antibodies are, I was never told at the time, but I will ask on my next visit to my GP and also ask if I can be retested to see what they are now.

I don't follow a gluten free diet but I think it's time that I do that. I was tested by my endo for Coelic Disease but that came back negative, but I do think this may be the way to go having read how others feel following a gluten-free diet with Hashi's.

I will also take the supplements you suggest. How much apple cider vinegar would you suggest I take?

I usually take Levo in the morning at about 7.30am, but some days it differs if I oversleep. I suspect I should keep it at the same time every day and perhaps drink a lot more water with it. I don't usually eat until late morning/early afternoon as I just can't face it, and have a first drink, a cup of tea at around 9.00am.

Thank you for your advice, lots to consider and act on here and I appreciate your help very much.

Reply

You only need Apple cider vinegar if you have symptoms of low stomach acid

Lots of posts about it on here

Ferritin needs to be at least 70 - not just "in range "

Vitamin D around 100nmol/L

B12 - we often need right at top of range

Good Vitamin B complex will improve this and folate

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Okay that's fab, thanks loads for your help :-)

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