Thank you for good advice and much support - Thyroid UK

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Thank you for good advice and much support

webar4780 profile image
12 Replies

Hi, just want to say a huge thank you.

Have suffered much ill health last 2.5yrs. Left me isolated, lonely in utter despair and very worried. I came across this site as I had nowhere to turn and no one who understood my dilemma.

One week ago, I sat in GP surgery crying loudly after my husband phoned surgery for advice and was told a doctor would see me then. I was so unwell!! On treatment from out of hours service, for chest infection, but getting worse. I left my bed, pyjamas on, I was not seen by a doctor. A nurse did baseline obs and told me they were fine. I had no chest infection. I could wait and see doctor in a couple of hours or next day. I went home too unwell to wait.

Today, I saw my GP after hospital notified me that my neutrophils were low 109. They told me blood form on its way. It never arrived.

My GP has given me a blood form. Because of this site, and all the very kind people who supported me, I discussed many issues today. For once, I did not worry about allotted time. I told GP I have been seeking support and been advised to get certain blood checks. I am very happy to say. I have a blood form for thyroid tests vitamin d b12 ferreting and folate as well as bbc etc.. my blood appointment is next Wednesday.

You all gave me the confidence to have the discussion with my GP. Thank you.

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webar4780
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12 Replies
webar4780 profile image
webar4780

Whoops! Sorry. Ferritin and fbc etc lol

Clutter profile image
Clutter

Webar4780,

Make sure you have an early blood test when TSH is highest and fast (water only) because TSH drops after eating and drinking. Ask for a printout of your results and ranges (ranges are the figures in brackets after results) and post them in a new question for advice.

webar4780 profile image
webar4780 in reply to Clutter

Thank you clutter.

I will do as you suggest. My appointment is for 9am so no problem and I will follow up print out when results are in.

I was prescribed hydroxychloriquine October 2016 (as diagnosed sjogrens in addition to hypothyroidism), and following this second infection (previous sinusitis, chest infection, ear infection), since starting plus losing so much hair, I stopped taking the tablets 10 days ago. GP is wondering if any connection with low neutrophils and hydroxychloriquine.

I cannot help but think, somehow, somewhere, thyroid is involved. Before I was first quite unwell, I took 125mcg levothroxine day, over last year reduced to 100mcg then 75mcg as dermatologist advised over prescribed following full body rash severe itching and dry skin. Currently, I am lethargic, weight increased, joint pains, brain fog, emotional, headaches,random rashes.... feeling very hormonal...

GP has today agreed maybe trial 100mcg day see if improve. Would you advise start 100 tomorrow or wait until after next Wednesday blood test?

Last November, tsh 2.21 (0.2-4.2)

T4 16.6 (9-26)

T3 4.2 (2.8-7.1)

I have never been given results from GP ever before today. I cannot thank you all enough for helping me help myself and get my GP to work with me. I told her current advice is tsh 1. Hope this was correct thing to say.

Bless you.

Clutter profile image
Clutter in reply to webar4780

Webar470,

Take Levothyroxine after your blood test.

You were under medicated in November to have TSH 2.21. I think you might as well wait until after your blood test next week before raising to 100mcg.

Try taking an antihistamine an hour before your Levothyroxine. If the rash resolves it is likely one of the filler ingredients in the Levothyroxine is causing an allergic reaction. If so, explain to you pharmacist and ask for a different make. The Levothyroxine available in UK is:

Mercury Pharma 25, 50 & 100mcg.

Actavis (also known as Actavis) 50 & 100mcg.

Wockhardt 25mcg.

Teva 12.5, 25, 50 & 100mcg. Teva is lactose-free.

kjkla85 profile image
kjkla85 in reply to Clutter

It must be new but I've got Teva 75mcg this week just so you know :)

kjkla85 profile image
kjkla85 in reply to kjkla85

Sorry didn't see the post further down :)

Clutter profile image
Clutter in reply to kjkla85

Kjkla85,

Teva was relaunched mid October 2016 so it is quite new.

shaws profile image
shawsAdministrator

Congratulations - it's quite amazing when you find there are thousands who have been or are in the same boat as yourself :)

The blood test (you may already know) has to be the very earliest and fasting (you can drink water). Allow 24 hours between your last dose of levo and the test and take afterwards. Always from now on get a print-out with the ranges for your own records and you can post if you have a query. We have to read, learn and ask questions and most members are more knowledgeable than doctors/endocrinologist through their own endeavours which is a great pity as it dents our confidence when we remain unwell.

SlowDragon profile image
SlowDragonAdministrator

If you can bare to wait, it would be better not to increase dose until after your blood test.

As you also have sjogrens (autoimmune) your thyroid is almost certainly also autoimmune- called Hashimoto's. But you could find out if GP has ever checked your thyroid antibodies.

If you have Hashimoto's then you may find adopting 100% gluten free diet can really help reduce symptoms, and lower antibodies slowly over time too.

thyroidpharmacist.com

chriskresser.com/the-gluten...

webar4780 profile image
webar4780

Thank you shaws, I agree with all you say!

My confidence was rock bottom.

When professional medical practitioners have clearly not been interested in symptoms, (if bloods and/or baseline obs were in 'normal' range), I have questioned my own sanity/intuition. I dread to think how low my spirit would have got if I had not found this site.

Slowdragon, thank you for taking the time, I value all advice. I will definitely ask GP to check thyroid antibodies. What a great idea. Due to reading posts on this site, I have changed from wheat bread to gluten free bread. My stomach is grateful!

I will continue changing shopping habits and i now buy organic fruit and vegetables.

I promote this site, to any, and every person sharing with me, their struggles, with health declining symptoms that challenges them/their caregivers.

webar4780 profile image
webar4780

Thank you Clutter

I will do as you advise.

Interestingly, once on 75mcg dose, I noticed that I had 50 activas and 25 mercury... this never did sit well with me... again, after seeing posts on health unlocked I began to wonder about additives and allergies. A couple of weeks ago, I mentioned this to pharmacist. I was told there is a 75mcg tablet!! Really!!!

As I have piriton prescribed is it beyond the realm for a pharmacist to supply one tablet one brand rather than two and two brands??? So, pharmacist agreed to provide one 75mcg see how I go. How funny, I would be getting that 23rd February next prescription due date but no worry now as I will start 100mcg 22nd!

It has,taken me awhile to rebuild my confidence and I have read many posts. Today, I have turned a corner, last week, I cried for England (or was that for nhs! Or misunderstood patients! Or just myself!),

Today, I am smiling!!!

I am wondering why I did not have the courage to post a question when I first came to health unlocked!!

Alas, I have done so now and I am gratified to responders, likes and merely for knowing others will and can get help and support they so often, desperately need!

Clutter profile image
Clutter in reply to webar4780

Webar470,

I think it must be Teva which is 75mcg. If people are brand sensitive they can do things like take 50/100mcg Actavis alternate days to achieve a 75mcg average dose.

I sed to have a problem with Mercury Pharma Levothyroxine and insisted on Actavis but pharmacist slipped in MP a couple of months ago and I didn't have a problem luckily.

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