Diagnosis Hyprothyroidism: I have been taking... - Thyroid UK

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Diagnosis Hyprothyroidism

Ladybex profile image
34 Replies

I have been taking LEVOTHYROXINE 25mcg for 28 days... my symptoms have been going on for over a year..

I’m still waking up with night fever, dry mouth and pins and needles in one hand and on occasions drop things.

My calf’s in my legs feel very heavy and my body aches... I have constipation too.

is this all part of an under active thyroid

Please help if you have any idea

I’ve also put on a stone in weight in the past 6 months and that’s not through eating ...

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Ladybex profile image
Ladybex
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34 Replies
Pieterse profile image
Pieterse

Good day

The some of the symptoms that you are mentioning doesn't sound like Thyroid symptoms to me. Pins and needles in your hand sounds like a nerve that is pinching.

Dry mouth is sometimes a sign of Diabetes.

Maybe you should take some Probiotics for your gut health because if your gut health is bad you can have lots of health problems. Drink 2L water a day. Hope you feel better soon.

kind regards

Aletta

Ladybex profile image
Ladybex in reply to Pieterse

Thanks Aletta, I’m drinking 2L water and taking probiotics and have been tested for diabetes .. just keep Having blood tests and due more soon... I’m so poorly thank you

Gmanfooty profile image
Gmanfooty

Hi I've just been diagnosed myself and been put on 50mcg daily only been taking them a few days, I've been having alot of your symptoms over the past few months including the pins and needles night sweats and on/off constipation ,dry mouth etc I think the worst for me has been the tiredness and fuzzy head not being as sharp as I normally am, from what I understand it can take weeks even months to see improvement, I'm assuming your over 50 as they've started you on 25mcg? It may be you need a higher dose but think it needs to be done in increments of 25, with your bloods done every 6 weeks,I'm sure someone alot more knowledgeable than me on here will give you a more in depth answer they've really helped me over last few days

Jivedancer profile image
Jivedancer in reply to Gmanfooty

Having been on Levothyroxine for the past 15 years or so on various doses until 3 years ago was taking 100mcg blood test showed it was to high so now on 75mcg daily I'm still not convinced it's right! But recent blood test showed up ok !

Ladybex profile image
Ladybex in reply to Jivedancer

🤞😊

Ladybex profile image
Ladybex

I am over 50 and have to have another blood test... thank you and wish you well, I feel so poorly ....

Thank you Ggg

Jivedancer profile image
Jivedancer in reply to Ladybex

Hi Ladybex its horrible feeling unwell hope you get things sorted take care

Ladybex profile image
Ladybex in reply to Jivedancer

Thank you jivedancer sending best wishes

SlowDragon profile image
SlowDragonAdministrator

Previous post shows you have autoimmune thyroid disease also called Hashimoto's diagnosed by high TPO antibodies

Low vitamin levels are extremely common and frequently cause symptoms in their own right

Ask GP to test vitamin D, folate, ferritin and B12 levels

Low B12 causes pins and needles and night sweats

Low vitamin D can cause joint pain

About Hashimoto's

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

Thyroid Bloods should be retested 6-8 weeks after each dose increase

Links about low vitamin D and Hashimoto's

ncbi.nlm.nih.gov/pubmed/286...

Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.

endocrine-abstracts.org/ea/...

Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.

Low B12

ncbi.nlm.nih.gov/pubmed/186...

There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms

NWA6 profile image
NWA6

Hey Ladybex, poor you I can empathise with your symtoms. I had them for 10yrs too 😔 I believe that they are part of the Hypothyroid condition but also they can come from low vitamin levels. You’ll need another blood test in a couple of weeks to see how that 25mcg has helped (not much by the sounds of it 😬) Can you book an appointment with your GP before the 6wks (from starting Levo) to discuss the fact that you feel no improvement and to ask for vitamin tests (folate, Ferritin, B12 and Vit D) Hopefuy your GP will say yes, if not it’s worth considering getting a private test.

Your GP has been cautious with your starting dose but you most likely will increae to 50mcg per day. Again wait 6wks and retest again. You need to keep going this way until you find a dose that brings you back to ‘normal’ ie your condition does not impact on your quality of life.

Ladybex profile image
Ladybex in reply to NWA6

THank you Paula... I have to wait another 2 weeks for the next blood test.. I had all the Vitamin tests done and they come back normal... it’s going on 2 years now and still not solved. Yours has been longer and it really does effect the quality of your life. Sending hugs hun

greygoose profile image
greygoose in reply to Ladybex

There's no such thing as 'normal'. It just means 'in-range'. But, the ranges are far too wide for the most part.

Do you have the actual numbers? If so, post them on here, with the ranges, and let's have a look. :)

Ladybex profile image
Ladybex in reply to greygoose

Will do soon as I get them .. next blood test 2 weeks 😊

Ladybex profile image
Ladybex

Thank you slow dragon I will ask for vitamin levels to be tested again. It takes weeks to get an appointment but I will ring and ask. Many thanks 😊

NWA6 profile image
NWA6 in reply to Ladybex

That’s why I was suggesting you phone your GP to ask for vitamin checks alongside your follow up blood test and also book an appointment for 5days after you get the blood test done because many are finding that they have to plan ahead because of the difficulty of available appointments. We had to be proactive to work within the busy system now have at our surgeries.

Ladybex profile image
Ladybex in reply to NWA6

Thanks Paula 😊

shaws profile image
shawsAdministrator

Don't worry too much yet about your weight gain. It is due to hypothyroidism because our metabolism has become so slow/low that weight is increaed.

Once you are on an optimum dose of thyroid hormones (this has to be very gradualy) which might work well for for you and weight reduce.

Some hints:-

Blood tests have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and test and take it afterwards. This helps keep the TSH at its highest as doctors only look at the TSH (thyroid stimulating hormone) which is from the pituitary gland and it rises whilst trying to get the thyroid gland to pump out more hormones. The aim is a TSH of 1 or lower. The majority of doctors seem to believe that if the TSH is "in range" that we're on sufficient but this is wrong as we need a TSH of 1 or lower.

Always get a print-out of your results, with the ranges, for your own records and post if you have a query. Always put the ranges otherwise members cannot respond as labs differ in their machines.

It is a big learning curve for us, the patients, if not improving on levothyroxine which is also known as T4.

You can also peruse the following, which has lots of information and TUK began with Lyn Mynot in her garden shed and just has two assistants to do all the research etc that is needed for the professionals.

thyroiduk.org.uk/tuk/About_...

The aim is a TSH of 1 or lower with B12, Vit D, iron, ferritin and folate at optimum. Ask for these to be checked too as deficiencies can also cause symptoms.

Ladybex profile image
Ladybex in reply to shaws

Thank you so much info 😊

Ladybex profile image
Ladybex

Will do thank you 😊

Some of those sound like low B12 symptoms - serum B12 needs to be at least 500 and active B12 over 75. However, 25mcg is child's dose - the normal adult starter dose is 50mcg - and too low a dose can make you feel worse. You should get another blood test after 6 weeks and a 25mcg increase in levo and repeat that every 6-8 weeks until symptoms are gone and TSH is under 1 and free T4 and Free T3 in the upper part of their ranges.

Ladybex profile image
Ladybex in reply to Angel_of_the_North

Thank you ... just waiting for that next blood test and hopefully they will increase dose ...

Sybilla14 profile image
Sybilla14 in reply to Ladybex

Hi Ladybex, please do not rely on your GP to get the dose right. He/she is likely to leave you on a dose that gets your tsh into the reference range. My GP was happy when my TSH dropped to 4 on 50mcg Levo but I ended up on 150mcg, TSH slightly below the range and still not feeling my best. Unfortunately with this disease you need to be your own advocate and fight. In my case, with an open minded GP who can see I’ve gained a lot of knowledge myself, he has allowed me to drive the dosing and blood interpretations. You’ll most likely also need to take it in your own hands as dosing is based on blood results and not on what is required for you.

Ladybex profile image
Ladybex in reply to Sybilla14

I’m not very good with that... 😞

Hypothyro profile image
Hypothyro

Hi Ladybex, I get exactly same symptoms as you, dry mouth pins & needles etc. I am not diabetic & no nerve problems (both tested) & drink 3 litres of water a day. It is side effects of hypothyroidism. I haven’t found anything that helps either.

Good Luck 👍

Ladybex profile image
Ladybex in reply to Hypothyro

Sorry to hear that ... hope you find a resolution like me soon as possible so we can have some quality of life...

take care 😊

Buddy195 profile image
Buddy195Administrator

I also have pins and needles, achy calves and a dry mouth.... you are not alone! I did see a consultant hand surgeon who said I had carpel tunnel. However, a trusted physio disagreed, saying I was just anxious (from thyroid) and Recommended some stretches, eg stretching arms whilst lying backwards over a physio ball. I’ve got to say this stretch has helped a lot and I didn’t need injections recommended by consultant. I’m finding gentle Pilates eases the pins and needles/ lower leg aches.

Hope your pain eases soon.

Ladybex profile image
Ladybex in reply to Buddy195

Thank you Buddy I will look into pilates 😊

Hey Ladybex, I have or had all of them, as hypothyroid. My vits are excellent as per recent tests, but pins and needles start when low on dose. My whole legs are like lead some days, but arms are the worst now. Dry mouth, you feel like your lips will stick to your teeth, having this right now. Fever at night and early morning, aches from water retention, super clumsy, I'm walking into things. So yeah, this is what being underactive feels. You will be fine in time xxx

Ladybex profile image
Ladybex in reply to

Thank you and good to hear your ok now 😊

in reply to Ladybex

Far from okay, but keeping positive :)

silverfox7 profile image
silverfox7

25 mcg is considered a low starting dose now but when I was diagnosed everyone started on that but you will soon catch up. Many have said you should be retested in 6 weeks and that is good general advice but some doctors are't always clued up on that either! But we start low to get out bodies used to it and the 6 weeks many have mentioned is because it takes each new does a full 6 weeks to fully get into your body which is why you are t feeling much different at the moment.

So two 'issues' at the moment, it's too early to comment on how different you feel at the moment. The other being it's not the dose you will be on for ever! After 6 weeks you need another test and this will most likely indicates you need an increase and this process is retested until you are taking the correct dose for you. It could take 3-6 months to find your ideal dose, may be even longer but at least each dose. Hangs you will be getting nearer to your goal. Sadly we can't speed it up as often doing that means starting again. Things move slowly in our Thyroid world so patience is often needed.

When you get any results always ask your doctor for a print out for your records. He can't refuse and he can no longer charge for them either. That was stopped just over a year ago.

The results should also include the ranges as they differ from lab to lab so if you post your results for comment we need to know the range that goes with your results otherwise we would just be guessing.

Also this forum is run by Thyroid U.K. So have a look at their site as lots of useful info that I'm sure with help you and give you confidence. Shout out if anything you don't understand.

Ladybex profile image
Ladybex in reply to silverfox7

Thank you silverfox

I’m due another blood test in 2 weeks... will ask for results 😊

silverfox7 profile image
silverfox7

Sorry, just spotted I said at one point retest in 6 months when it should have been 6 weeks. Think my brain was thinking ahead to saying it an take 3-6 months to get up to your best dose.

Let us know your results and ranges when you get your next test results and hopefully there are improving.

Ladybex profile image
Ladybex in reply to silverfox7

I will let you know and no worries... thank you 😊

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