Recently diagnosed hyperthyroidism: Hello, new... - Thyroid UK

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Recently diagnosed hyperthyroidism

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Hello, new poster here.

Age 54, post meno, strong family history of hyper (Graves?) and hypo.

Diagnosed hyperthyroid 10 days ago, GP prescribed 5mg Carbimazole once a day and referred me.

The only levels I have are T4 : 43, T3 : 20.6, TSH : <0.01.

Still feeling pretty rough as the meds have not kicked in (and seem to be a low dose), I have Endo appointment 10/12.

Any comments welcome, especially re my levels.

Thanks in anticipation

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15 Replies
shaws profile image
shawsAdministrator

Welcome to our forum,

Those members who are Hyper will respond when they read your post.

When you post your results it is helpful to also post the ranges. Ranges are in brackets after the results.

I am assuming that blood tests will also follow the regime for hypothyroid patients. i.e. Blood tests should be as early as possible, fasting (you can drink water) and allow a gap of 24 hours between dose and test and take afterwards.

in reply to shaws

Thanks, the GP didn't give me the ranges, but now I know I will ask for them next time.

My first blood test was a fasting one but I haven't been given any instructions for the next one (with practice nurse next Thursday). Still waiting for the letter confirming Endo appointment, I guess this will give info regarding preparation.

shaws profile image
shawsAdministrator in reply to

I doubt you will get 'preparation' advice, I am very sorry to say but I do hope you will.

in reply to shaws

Ok, both appointments are early-ish so I'll fast and hold off my meds until after,

thanks for the advice

MiniMum97 profile image
MiniMum97 in reply to

The fasting doesn’t matter as much if you are hyper. Fasting and early morning will give you the highest TSH of the day. I personally get tests first thing and fasting anyway as it makes the tests comparable as you are always having tests under the same conditions. I also am hypo as well as hyper (not at the same time!) so more relevant to me if that makes sense.

If you are taking a supplement with biotin this should be stopped 4/5 days before as it may affect the results of a thyroid blood test.

I am not sure if taking carbi before the test will affect the test but better safe than sorry!

in reply to MiniMum97

Thanks, that's all very useful.

I'm surprised there's not a basic factsheet that GPs can give out on diagnosis. (maybe there is?).

I'm interested when you say you're hypo as well as hyper. I was absolutely certain the results would show I was hypo, as apart from the shakes my symptoms are all hypo. Now, with hindsight, I can identify times in my life when I realise I have been hyper, but the majority of the time my symptoms have been hypo.

Is it possible to swing from one to the other naturally, without any medication? Is there a name for this? Feel like I should mention it at Endo appointment.

MiniMum97 profile image
MiniMum97 in reply to

It’s unusual but it is possible to have Graves and Hashimoto’s and therefore have periods of being both hypo and hyper.

Sometimes hyper symptoms and hypo symptoms feel very similar so your experience could be that.

It is also possible to just have hashis only but have “swings” where the attack on your thyroid causes a hormone dump and you temporarily have high levels in your blood and hyper symptoms.

At your endo appt, I would expect to be tested for TSI and/or TRab antibodies. Which would confirm Graves’ disease. If those are negative you should then be referred for a thyroid scan to look for nodules and this should also confirm hashis if present.

Don’t accept a Graves diagnosis without a positive antibodies test!

in reply to MiniMum97

Thanks, that's so helpful, it's all a bit of a mystery to me at the moment

Fruitandnutcase profile image
Fruitandnutcase

Hi Datatraveller, welcome to the group. It saved my sanity when I developed Graves in 2012. I was a bit older than you at the time. It would help if you could post your blood test results for people to see.

Basically though, when I was finally diagnosed I saw my GP on a Wednesday, bloods taken on the Thursday and I got a phone message on the Friday to say I had a very overactive thyroid with antibodies, she had left a prescription for carbimazole at reception for me, had made arrangements to see an endo and to come back for a blood test after taking the carbimazole for four weeks. I couldn’t take beta blockers to calm my rapid heartbeat because I have asthma so I had to sit that out.

I started on 20mcg and after the blood test I got a letter from my endo (who I still hadn’t seen) telling me to get more from my doctor and double up to 40mcg a day. I did that and by the time I got to see the endo I was quite hypo! Should have been tested a bit sooner. I think.

At that appointment I was told to start on levothyroxine right away and to stop the carb for ‘a few days’. How long is a piece of string? Anyway I started the levo - think it was only 25mcg - I was in my mid sixties so that was a starter dose - I think- stopped the carb for four days - then continued to take 40mcg carbimazole a day along with increasing doses of levothyroxine- exactly a year later by which time I was taking 40mcg carbimazole and 100mcg levothyroxine I stopped it all and I’ve been ok so far.

I’d say, always get and keep a copy of any blood tests. Ask your doctor to test your ferritin, folates, vitamin B12 and vitamin D. You need them all to be well up with8n their ranges for your thyroid to work well. If your doctor says you don’t need to I’d look into doing it yourself. I did that eventually- much easier than pleading and begging. I use Blue Horizons home fingerprock test. Very easy.

So keep your blood test results. I also kept an old page a day diary where I jotted down a quick note on how I was feeling everyday. When I increased drugs etc. Especially useful when you change levels of drugs - lets you relate what you are taking to your blood test results. I also jotted down any questions as they occurred to me. I kept copies of anything interesting I found on here in there as well.

Read as much as you can about your condition too, ask questions of your doctors and expect answers. Be a part of your treatment rather than just let them treat you.

My pharmacist also came out to tell me to take a high strength vitamin C capsule when I started on carbimazole which I did - 1000mcg vitamin C +zinc - and I was very well on it all once I settled down.

My hospital treats with ‘block and replace’, which I liked - I was told they use the ‘fast treatment’ - it took exactly a year! The other way is titrating down carbimazole, I don’t know anything about that but you can read about the two different ways of treating Graves - i started my treatment at the end of November and didn’t actually see my endo until the end of February in that time the carb was working away getting my body ready to start on the levothyroxine.

Good luck with it all, your u have come to the right place for help and support. I couldn’t have survived without HU and Thyroiduk.org

in reply to Fruitandnutcase

Thank you so much for such a detailed and informative reply.

I think I've probably been having thyroid issues for about 6 years, since the menopause, but it's only retrospectively that I realise this. Been prescribed (but not taken) citalopram as GP said I was suffering from anxiety - I did feel anxious, shaky and as if I had a lump in my throat, but felt that there was an underlying reason for this. It was a kind of relief to find out that there was a real problem that can (hopefully) be dealt with, so I understand your comment about diagnosis saving your sanity.

I had thought about keeping a kind of diary, so will definitely take up your suggestion to do this. I need to be more assertive about getting test results, it was like getting blood out of a stone getting the little information I did, but now I know about ranges I'll ask for those. All I know on that subject is that the GP said the top "normal" figure for T4 should be 20 and mine was 43.

I take Ester C (Vitamin C 1000mg, Calcium 100mg), Selnium ACE with Zinc (Vit A 1500ug, Vit E 20mg, Vit C 180mg, B6 3mg, Selenium 200ug, Zinc 30mg) Better You Vitamin D spray 6000iu (150ug) and Vitamin B complex, although this includes Folic Acid and I think I've read that Folate is better?

Thanks again for your help and support

Fruitandnutcase profile image
Fruitandnutcase in reply to

Forgot to add that I’m sure I’d had Graves for years before I was finally diagnosed. So many fruitless trips to the doctor I felt like. Was a hypochondriac who was developing ether dementia or a psychiatric problem. Not depressed - just totally deranged!

I was so anxious too - I was such a wreck and boy what a passenger I made for my other half. Three months before I was finally diagnosed I saw a gpdoctir who sat back in her seat, looked at me like I was s9mething that had crawled off a specimen slide and told me that I ‘was needing my holiday’!!! I came out of that appointment almost crying with frustration and said to my husband that that ‘woman thinks I'm nuts’.

Holiday - I needed treatment, so we went on holiday, we drove all the way to the south of France with me shaking, my heart bouncing out of my chest, chewing on Dr Bach’s Rescue Remedy chewies in between spraying Rescue Remedy in my mouth. It was awful.

If you are in the U.K. you are entitled to have a copy of your results. Think some people have to pay but I never had to. You want them with the lab ranges used - that’s the figures in brackets next to your result.

I take some of the vitamins C, sublingual B12, a good B complex, but I don’t take calcium. Fortunately I don’t have problems with folates and my ferritin is really high - too high but thats another matter.

I also a nice soak in the bath with magnesium flakes and use a magnesium cream - the gel is str9nger but I don’t like the sticky feeling I get with it. I have a Pilates teacher who is a physiotherapist who says it’s vitamin D we need for strong bones. Milk is for baby cows not humans! Suits me because I don’t drink milk at all, don’t mind cream or cheese but not milk or yoghurt. So it’s vitamin D for me and my bones. I started with Better You vitamin D spray but I recently found Better You vitamin D with vitamin K combined. So I’m trying that at the moment.

When you read of the problems other younger people have be glad you’re past menopause- at least doctors can’t try and say that’s what’s wrong with you. Fortunately the doctor I finally saw knew I wasn’t stressed and didn’t suggest an antidepressant. 😉

in reply to Fruitandnutcase

I felt exactly the same! So many little health problems that I felt like a hypochondriac, I eventually gave up and decided that I was having a very, very tough menopause. I was anxious and depressed but that was the effect, not the cause.

One night I got incredibly itchy skin - so much so that I turned to Dr Google. One of the first results was itchy skin as a symptom of thyroid problems. I checked the other symptoms and it all clicked into place. I felt so stupid - my entire female line has had some kind of thyroid problem, but at 54 I thought I'd been lucky and it had missed me.

I have a lot to learn, and I'm really grateful to have found such a welcoming and helpful community.

MiniMum97 profile image
MiniMum97

Ask about betablockers. They make you feel a lot better very quickly. My endo put me on 80mg slow release propranolol which worked better then taking normal beta blockers multiple times a day.

Ah, I read that a lot of people get given these along with Carbimazole when first diagnosed. I'll look into it, thanks.

MiniMum97 profile image
MiniMum97 in reply to

Yes do they have an immediate effect and significantly reduce all the symptoms (if course they do not treat the underlying cause but will make you feel better while you are waiting).

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