Did anyone else experience these symptoms with hypothyroidism..Exhausted, weak and whole body is sore and sensitive?

Hi I am new here & recently diagnosed with Hypothyroidism.. Ever since the diagnosis I have been even more anxious and low than I was before as it was sent for blood test with no indication of what was being tested then called and told I have this and that there was a prescription waiting. I feel the lack of information I received has left me with lots of questions and anxieties. As I feel as Ill as I did when I went for the bloods. Was wondering if anyone could share there worst symptoms and if severe exhaustion and feeling weak and whole body sensitivity soreness where part of it. Many thanks in advance!

[SeasideSusie Remembering]

Tysbird

Unfortunately your experience is not uncommon. It was very remiss of your GP not to tell you what you were being tested for, in fact "informed consent" is a requirement for all medical procedures so you should have been told.

If you would like to post your test results, with their reference ranges, and say what dose of Levo you are on and how long for, members will comment.

If you don't have your results, just pop along to your surgery and ask at the reception desk for a print out, we are legally entitled to our results here in the UK. Don't accept verbal or written results as mistakes can be made.

Post your results/ranges like this

TSH: 2.5 (0.2-4.2)

and for a full picture it's best if the following have been tested:

TSH

FT4

FT3

Thyroid antibodies

and as nutrient levels are important it would be good if Vit D, B12, Folate and Ferritin have also been tested.

[Hidden in reply to SeasideSusie]

Hi SeasideSusie, thank you for the information I was already deficient in Vit D so I do take supplements for that. And I am unaware of any of my test results but I will go and request them as I didn’t know I could get hold of them. I am currently taking 75mg of the thyroid medication and was told to take this for 3 months and then be retested.

[SeasideSusie Remembering in reply to Hidden]

I am currently taking 75mg of the thyroid medication and was told to take this for 3 months and then be retested.

That's too long, retesting should be done 6 weeks after starting levothyroxine, increase if necessary, further testing every 6-8 weeks with increases if necessary until your levels are where they need to be for you to feel well.

50mcg is the normal starter dose (children, the elderly and those with heart conditions 25mcg) so it might be that you were started on too high a dose.

(By the way, it's 75mcg [micrograms] not 75mg [milligrams] )

I was already deficient in Vit D so I do take supplements for that

What was your level?

Did you have loading doses?

Have the loading doses finished?

If so, were you retested to check your new level?

What dose D3 are you taking now?

Do you take D3's important cofactors - magnesium and Vit K2-MK7?

[Hidden in reply to SeasideSusie]

Thank you for the correction 😊🙈 so much to learn and take in! And I am under rheumatology and have six monthly blood tests from them (for another condition) that’s how originally knew I was deficient was prescribed

Fultium D3 800IU of that helps?However with the recent blood tests from the GP the GP just advised me to take ‘high strength’ over the counter vitamin D. Again sorry I don’t have any of my levels from these tests I will request them as soon as GP is open on Monday and post them as you’ve suggested then hopefully when I have this will all start making more sense. Thank you again for all this information this is all really helpful as I hadn’t a clue where to start really. Again sorry I am so uninformed at the moment.

[SeasideSusie Remembering in reply to Hidden]

Don't worry, there is a lot to learn.

800iu D3 is barely a maintenance dose for someone with a decent level already, it wont correct a deficiency.

If you can obtain your results, please post them and we can take it from there. For the GP to say buy some high strength D3 over the counter makes me think that your level is certainly less than 50nmol/L so let's see what it is and I'll point you in the right direction for where to find out exactly how much D3 you should be taking.

Just post everything you have and include the reference ranges and we can help.

[SlowDragon Administrator in reply to Hidden]

If you have RA this is autoimmune and means its most likely your hypothyroidism is due to autoimmune thyroid disease

Low vitamin levels are common with both these diseases

GP should be testing thyroid antibodies and vitamins

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

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

[Hidden in reply to SlowDragon]

I have systematic sjogrens. And I don’t think the GP tested for antibodies but I will request as like you say it could make sense that one autoimmune cause another. Will also mention at my next rheumatology appointment.

I think I have been so overwhelmed with everything I’ve just took what the GP says and not questioned it but I know from experience that sometimes I have to take a bit more of a proactive role with the GP’s.

I appreciate all the advice as I now have a lot of information and a guide of what to ask GP for etc. As said yesterday as soon as I have my original results I will post them on here. Thanks again.

[SlowDragon Administrator]

Also how long since you started on Levothyroxine and at what dose

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

Standard starter dose is 50mcg Levothyroxine and dose is increased slowly in 25mcg steps upwards

You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Once you get copies of results come back with new post and members can advise on next steps

Did GP explain to Always take Levo on empty stomach and then nothing apart from water for at least an hour after.

Many take Levothyroxine early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

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

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients.

Teva is the only brand that makes 75mcg tablet. So when dose is increased to 75mcg, you can take 50mcg plus 25mcg tablets if wanting to avoid Teva

[Hidden in reply to SlowDragon]

Thank you, I take one 25mg and one 50mg I am unsure if the brand and haven’t got it to hand at this point. I have been taking it nearly two months now and GP has said to go for blood after 3 months so I will have one month left before being retested. I will get the information when the practice is open and repost as you’ve suggested thank you. Also this is the dose I was started on.

[SlowDragon Administrator in reply to Hidden]

When bloods are tested Recommended on here that all Thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

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)

[Hidden in reply to SlowDragon]

Hi SlowDragon, I have looked this morning and the brand I am taking is Teva. I am going to my doctors to request my results as advised but also to see if I can get an appointment.

Just wondering is it a good idea to ask to be sent for my blood tests now rather than waiting the extra month as they’ve said? as the advice on here says it should be 6-8 weeks? Is there anything else I should ask/ mention to them? And I’m on week 7 almost week 8 of taking these.

This morning I have woken up with what seems like my heart beating ( almost feels like vibrating ) hard and missing a beat this has been happening quite often and waking me up, other times it feels very slow and almost a delayed beat. I will definitely tell them this as I am feeling so unwell I’m really worried.

[SlowDragon Administrator in reply to Hidden]

Fast heart beat can be due to under medication or over. Or low vitamins

Ask for thyroid antibodies to be tested, plus folate, B12 and ferritin to be tested too at next blood test

Yes when been 6-8 weeks you could see if GP will agree to blood test

If you can't get bloods done on NHS, then testing privately

See you already have low vitamin D

GP will only prescribe to bring vitamin D up to 50nmol. Aiming to improve vitamin D by self supplementing to at least 80nmol and around 100nmol may be better .







Once you Improve level, very likely you will need on going maintenance dose to keep it there.




Retesting twice yearly via vitamindtest.org.uk




Vitamin D mouth spray by Better You is good as avoids poor gut function.




It's trial and error what dose each person needs

[Hidden in reply to SlowDragon]

Thank you.

[Calends]

Yes. It is just awful, isn't it?

[Hidden in reply to Calends]

Hi Calends, thanks for the reply. Yes it is, the pain has been everywhere to the point it uncomfortable to lie down or sit down without constant fidgeting, and even clothes touching my skin hurts. I think as I was started on the medication I thought I would have felt some relief but from talking to people on here and reading a bit more it seems it’s not as simple and can take a while to get everything right!

[SlowDragon Administrator in reply to Hidden]

There are almost 2 million people in UK on Levothyroxine. The majority are fine and not on forums like this.

Many find once Levothyroxine dose is correct, symptoms improve. It can take a few months

Only About 10-20% of us find getting balance more difficult. Lots of info and tips on how to improve on here

[Calends in reply to Hidden]

I am not there yet. My skin still crawls and I can't sleep at night. I am snappy, depressed, and fat with a really bad attitude but the weird thing is I know it isn't me most of the time...I know it is coming out of the hormone disorder. Doesn't make me any more charming but it does mean that I can listen. If I get any good news I'll share it so we can both keep up some hope!