Thyroid levels and symptoms

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Can anyone please explain what sort of levels would cause symptoms and how much of an increase may likely be needed to get to a level of no symptoms?

I was on a dose of 100 for underactive thyroid. Had bloods done. Doctor stated normal level is 4 or under and that mine was 13.

He has upped meds by 25 and will test bloods again in 3 months. Is the small increase likely to get to a normal level or could I be looking at many increases before then?

Thanks.

Anyone?

Just to be clear, is it your TSH that was 13?

I think so? It's the one that makes you tired and feel sick constantly when it's too high.

Sorry I'm not the most clued up on it.

Lab range is 4 or under.

Normal levels are not 4 or under. You can be symptomatic even at 2.

While medicated you should be around 1.

In a lot of countries you'd be diagnosed as hypothyroid if your TSH went above 3, for example.

The small increase may be enough but see what your levels are in 3 months. Good luck. :)

To feel well, people with hypothyroidism generally need to have their TSH below 1 and their T4 and T3 in the upper part of their ranges. It is unlikely your GP will test T4 and T3. You can ask or rest privately. Medichecks and Blue Horizon are companies I have used in the past.

Some people with hypothyroidism struggle to convert T4 to T3 so may not feel well however much levothyroxine they take.

People with hypothyroidism also tend to be low in nutrients which can make them feel unwell. You can ask your GP to check your folate, B12, ferritin and vitamin d. Deficiencies in all of these can cause symptoms similar to hypothyroidism. You want your levels to be optimal which is generally when they are about half way through their ranges. Vitamin d should be at about 100.

If your TSH is 13 you are likely to have some way to go before you feel better. It took me 4-5 months of gradual increases before I started to feel better and my TSH was only just over 4. Your GP is right to only increase by 25mcg at a time but retesting should be done in 6-8 weeks not three months so I would ask for a test then. It only takes 6-8 weeks for the levo to take effect.

Thank you. So far I don't feel any better. I'm really struggling with how bad I feel.

I'm feeling a little frustrated at the small dose increase with such a long wait as I don't want to be feeling like this for another 6-12 months.

Also, none medical people seem to not take it very seriously. Asthough I'm making up how I feel.

3 months doesn't seem right op, when increasing thyroid meds it's usual
to test blood levels every 6 weeks. I would query it with the GP.
A tip - if you take your ego meds at bedtime they are better absorbed according to research. Every little helps.

ego? Levo

I will give them a ring on Monday. I take them in the morning as that's when I was advised to.

Just so fed up of feeling extremely crap. I am a single mum and work full time so it's really getting a struggle now.

Just came on to offer the same advice you’ve already had really. I can only function with a tsh below 1. I keep a record of each test result I get and the range (I always ask the receptionist) I also write a note of how I’ve been feeling. I felt like I was dieing when it reached 65! The trouble with thyroid issues is that you don’t know if your symptoms are because you’re feeling so rough with something like a flu starting or if it’s your thyroid and if your thyroid is out of range it can tKe you a while to realise. I now take 175mg one day and 200mg the next and it seems fairly stable but I’ve been told to request a blood test if I ever feel it’s gone bad sgain. I’ve been hypothyroid for nearly 30 years.

Thyroid meds should only ever be increased or decreased by 25mcg at a time. Otherwise it can be too much change and you can miss you "sweet spot" and go overactive. Unfortunately you need to be patient. It is very frustrating I know but it might take a long time.

Don't expect your doctor to care or be sympathetic. And expect to be your own advocate. You may have to fight for the correct treatment. Prepare yourself. It's exhausting and upsetting but sadly just the way it is.

I have a TSH of 19 and have just been started on levothyroxine 25mcg daily with a repeat blood test in ten weeks. At this rate it’s going to take years until I feel better. ☹️

The usual starting dose is 50mcg unless you are elderly. And retests should always be done in 6-8 weeks. I would go back to your GP.

I'm currently on 125. I was on 100 and my blood results came back as 13 so he upped it to 125, but won't retest for another 3 months.

I'm feeling dreadful.

Send a letter in with the NICE guidelines asking for more frequent blood tests. Interestingly they say adjust meds every 3-4 weeks! It is my understanding though that it takes thyroid hormones in the body 6-8 weeks to fully adjust to a change in meds.

cks.nice.org.uk/hypothyroidism#!prescribinginfosub

You could also try seeing a different GP.

Make sure you are taking your levo on an empty stomach an hour before any or drink other than water (and 2hrs after eating only drinking if you take your levo at night). You should also take it at least 4 hrs away from any supplements as some supplements can reduce absorption of levo.

Definitely check nice guidelines; I've had retests within 6 weeks when adjusting. It can be useful to wait longer simply to check how symptoms pan out as sometimes it can take a while to recover fully as you're sort of in a cfs type state.

Regarding
Also, none medical people seem to not take it very seriously. Asthough I'm making up how I feel.

I now know many friends / colleagues with hypothyroidism or other thyroid issues. All do say that until you've experienced it, it's impossible to explain or imagine how you feel.

Please do get this book (below) and consider sending off for leaflets from, showing online versions of or joining the British thyroid foundation (you get sent a pack and quarterly magazine plus can have queries answered by medical experts which are printed in the mags) to anyone who doubts how unwell you can feel. It affects mental skills too notably vocabulary, short term and working memory as well as executive function. This can impact mood - I actually get anxious as I know I'm not coping with daily life/ work. It weakens muscles hence aches and pains or fatigue.

Regarding taking thyroxine, do try advice here but the key thing is long term consistency. I regularly forget at night so must take in morning, forgetting is worse than any benefit taken at night and I keep a close eye on symptoms and blood tests. Most people end up feeling much better between 0.4 and 1 tsh but it's person and symptom dependent. Too much can be as bad! Some have to be even below this (so on a little too much) which is fine if symptoms are good and sleep is good. (An endocrinologist would concur).

Always ask for either a verbal or paper copy of your results, it's helpful to refer to.

Sorry links:

www.amazon.co.uk/Thyroid-Disorders-Understanding-Family-Doctor/dp/1903474191

I remember a section explaining what it's like you can show people. Plus it explains why it's best around tsh 1.

www.btf-thyroid.org/

Leaflets

www.btf-thyroid.org/information/leaflets

Thank you for the links.

I'm feeling pretty crap this evening. Absolutely exhausted but yet again I just can't fall asleep. Have been trying since 10.

Things to take alongside the levo that might help

Selenium. Helps you to process the levo
Magnesium. Help you to sleep
Vit D. Helps with exhaustion
Iron. Helps with energy

As a starting point, you should be taking 1.6mcg of levo for every kg you weigh. So at 125 mcg, you would weigh about 78kg?? Now that isnt rigid, I take much more than the recommended as I am not a good converter (you body has to convert the levo before it can use it)