Newly diagnosed and feel so ill. Is this normal?

[Sue777]

I was diagnosed with hypothyroidism on Xmas Eve. My TSH was 79 and T4 was 6.4. GP started me on 25mcg Levo for 2 weeks and then increased to 50. I had further blood test yesterday and go back to Dr next week for results. I feel worse than ever, my joints are really painful I have no energy and some days I can hardly get out if bed I feel so exhausted. I can't concentrate on anything. This morning I can feel a kind of rash little spots under the skin on my chest area. I went back to work after Christmas break but after a week I broke down in tears as I couldn't focus on my tasks. My GP has signed me off work for 4 weeks. I felt rough before I was diagnosed but was coping. Now I feel like I'm being poisoned. Is this normal when u start meds?

[shaws Administrator]

Unfortunately, many people don't respond well to levothyroxine initially. As your TSH was very high originally and T4 very low, your GP prescribed 25mcg of levo which is a very low dose. Normally 50mcg is a starting dose unless you are very frail. After your next blood test it will be increased again and so on until you feel better. Beware though, that some GP's diagnose only by the TSH and the patient is deemed better when blood tests are within the 'normal range' even though there are many clinical symptoms.

With a bit of luck and increases in levo, you may feel so much better. I am not surprised you burst into tears at work with levo at 25mcg. Were you told to take levo on an empty stomach first thing with a full glass of water and dont have breakfast till between 1/2 to 1 hour later. Do not take your medication before your blood tests, take levo afterwards. Always get a copy of your blood tests, with the ranges, for your own records and so you can post them here for members to comment. It is a big learning curve as hypothyroidism affects every cell in our body. T4 (levothyroxine) is the inactive hormone and should convert to enough T3 (active hormone) to make us feel well. Iron is need for good conversion, so ask GP to do Vitamin B12, Vit D, iron, ferritin and folate.

Muscle pain etc and feeling extremely unwell is common as there is not enough thyroid gland hormones and it is also a clinical symptom.

[Sue777]

Thank you for your reply. Yes I am taking the tablets first thing in the morning and don't eat or drink for at least an hour after. I think GP tested for B12 etc. I will wait and see what GP says about results next week.

[shaws Administrator in reply to Sue777]

Post your results if you have a query about them. If you reply to a particular comment, you have to press the yellow Reply to this otherwise the person isn't alerted and you may wonder why they haven't responded, if one was needed, You will have had an alert to this and you will see it is also indented. Best wishes

[Aurealis in reply to shaws]

I don't think I've ever had an alert, where would it be?

[shaws Administrator in reply to Aurealis]

It will be on your email address.

[Aurealis]

When your thyroid becomes underactive your levels go down very gradually and symptoms don't show much at first. When you start on meds your levels may still be falling for a while if your dose isn't enough to compensate for the gradual fall. Eventually you'll increase the dose enough to get levels to where you need them - but don't expect the tests necessarily to be helpful, as for many of us they're not at all helpful. Sorry you feel poorly, it will get better.

[T3sortedme]

Sue

Hypothyroidism takes quite a long time to sort out, so you will need patience. There are a number of reasons.

It takes quite a while for the body to build up the T4. It takes a while for the rest of the body cycles to adjust to the new regime. Cold or viruses, stress or doing too much can knock you back.

The doctor will check you every couple of months and increase the dose slowly until you feel well. They use the TSH measure to tell if you are well. Sadly this is not a good guide! It is a measure of how much your body is calling for T4 and in theory indicates a shortage but it is an unreliable test in most patient's experience. How you feel - energy, brain fog etc are the real measure. Good doctors treat patients according to their symptoms; poor doctors go entirely by blood test results. Hopefully yours will listen to you.

Many people get well on T4 but some have a problem with turning T4 (storage form of hormone) into T3 (active form of hormone on cells). These people need T4 and T3 in combination.

A few people really struggle to convert T4 to T3 and their body chemistry turns some into reverse T3 (rT3) which actually blocks the good T3 getting into the cells. These people (me included) have to take pure T3 to get well.

This is all a journey and each adjustment takes weeks to settle before we know if it has helped.

I really hope the T4 works for you. I went up to 120mg daily, my TSH was 0.01 but I did not feel any better! You may find your TSH has to be below 1 for you to be well.

As you can see this could take quite a long time unless you are lucky and respond well to T4. Hopefully that will happen!

One of things to be aware of is that hypothyroidism can chemically drive your emotions about, normally downwards. I got waves of sadness that would wash over me. I learnt it was chemical and the illness, not me. Otherwise I could have got quite depressed.

I learned to live within my energy limits and not push it all the time. I set a daily target of doing something useful that was within my ability so that I felt better / more positive about life. I sorted photos or music, painted pictures or cleared a cupboard; simple tasks. I was off work for months.

Hope this helps. Needs a lot of understanding from partner/friends. You need them through times like this. Communication was hard for me as I struggled to think or explain things twice

The good news is that you will get well! It takes time but you will get there. There is lots of support on this site too. Research information so you know more than your doctor. You need to become confident about what you know and input your thoughts into the process or sorting your medication.

Every blessing for your journey.

[Sue777 in reply to T3sortedme]

Thank you so much for taking the time to reply. I need to learn to be more patient as I understand now that it is going to take some time to feel well.

[destiny391 in reply to T3sortedme]

This is a very helpful post, thank you.

I was diagnosed two weeks ago. My TSH was 316 (highest my doctors has ever seen or heard of) been on 25mcg since then, but I've felt worse since starting the meds. Doctor signed me off work for one week.

I was told to increase the dose to 50 tomorrow and again to 75 next Friday and then another blood test after one week @ 75.

I hope I'll start feeling better after increasing tomorrow as I'm going back to work on Monday. I just hope I can cope!

This website is very helpful and I'm still learning about this disease as it's all new to me still.

[Sue777 in reply to destiny391]

I do hope u will feel well enough to cope at work. Your TSH is extremely high and as others have said it will take time for you to feel well. Unfortunately I have not improved as yet. My last blood tests showed levels have reduced to TSH of 22 and I have been diagnosed with Hashis. My GP has referred me to an endocrinologists but told me I probably won't get an appt until April. I have been signed off for another 6 weeks. I am just hoping I start to feel better soon. Has your GP asked for your vit D, ferritin, folate and B12 to be tested as well as meds won't work properly if these are low. I am low in vit D and B12 and started supplements last week.

[destiny391 in reply to Sue777]

No I've only had one blood test so far. My next one is in two weeks time. I will bring the list of what I want to be tested for, thanks for that!

Wow you've been signed off for six weeks? I thought one week would be enough for me but right now I doubt it. I've been contemplating going back to gp to ask them to sign me off for a bit longer but I've now decided to try and return to work and hope for the best.

I still don't understand how I can feel worse now that I've started levo.

Thanks for your response. I hope you feel better soon!

[HarryE in reply to destiny391]

I've been off work since mid Jan, although haven't actually been given any treatment yet! I would like to hope you get on ok but I really think you should have some more time off

[Sue777 in reply to destiny391]

I hope work goes okay for you. I went back to work in January but only managed a day and a half. I broke down in tears because I was so exhausted and I couldn't concentrate. I was so upset because if you knew me you would know that I take great pride in my work and I felt such a failure. I am now taking each day as it comes. Some are better than others. Good luck and keep us posted on how you get on. X

[Mousey3]

Hi sorry to hear you are feeling so ill , I was to I had terrible itchy skin & a rash under the skin like you have said all over my chest I felt so horrible with it so I know what you mean & I had no idea what it was till I was tested then they found out it was underactive thyroid , I found it took a good three months or so & I was put straight on 50 mcg of levo then slowly ,but I mean very slowly my symptoms started to get better but it took time I've been on it a year now & I do feel a lot better but I find if I have a really busy day & I'm rushing about a lot I start to get a sore dry throat feel ache & itchy so just make sure you don't over do things.

[Sue777 in reply to Mousey3]

Thanks for taking the time to reply. It is reassuring to know others have had same experiences. I have suffered with constant sore throats for years and no doubt this was caused by this condition.