Feeling ill again

[barb62]

Hi everyone, I was diagnosed a month ago and felt great on 50 levo after a week. Now gradually feeling more achy and tired. Had some dairy and sugar for the first time in a month and feel terrible today. Has anyone else experienced this

[greygoose]

50 mcg is only a starter dose. You should get retested in two weeks' time, and get an increase of 25 mcg. The fact that your symptoms are coming back just means you need an increase. That's the way it works.

[Princesselle]

Hi, I was diagnosed in Dec 17, put on 50mg and exactly the same. Felt far better at first and now feel the same as I did back in Dec. Went for blood test then follow up with GP, but apparently as my levels were now 1.6c I am “fine” now. It was very much the case of “well the computer says you are ok, so you must be”. I am now reading more about it and been reading Thyroid Health - Medical Medium and the info about diet and liver is very interesting. Says no dairy and definitely no eggs, cut out sugar etc. A precious Doc had advised I read the 8 week blood sugar diet book too to help.

[Hidden in reply to Princesselle]

I would be interested in what the author said about liver. Good or bad? I have been successfully raising my ferritin with weekly liver. I try to buy grass-fed but not always available. Thanks. 🐱 irina1975

[Princesselle in reply to Hidden]

Hi, it was Anthony William. He describes how there are a lot of diseases linked to Epstein Barr virus and by keeping the liver clean and functioning it can reduce symptoms.

[Hidden in reply to Princesselle]

What about milk thistle is it any good for cleaning up the liver? Just curious question 🤔

[Princesselle in reply to Hidden]

I think it is, I have taken it in and off, but worth reading up on. It also talks about L-lysine. I used to take this as a supplement years ago as used to suffer a lot with cold sores. This is covered in the book too about the immune system.

[Hidden in reply to Princesselle]

Thank you. Boy, was I off-base. The author speaking about the body part (liver) and I was thinking of the food! Duh!

[Fruitandnutcase]

Agree with GG, I imagine you need an increase in your levothyroxine by now. 50mcg is only really a starter dose. I have Graves and was being treated with block and replace. I started on 25mcg daily and used to feel terrible every time I needed an increase until I was taking 75/100 mcg a day.

I kept a symptom diary. It wasn’t massively detailed, just a quick note of how my body was feeling as well as the amount of thyroxine I was taking. It was useful.

I’m not surprised you say you feel terrible after taking sugar. I eat gluten free to reduce my thyroid antibodies (it works) but recently started binging on chocolate and I know I felt an awful lot healthier when I wasn’t eating sugar. I eat very little dairy though ( I just don’t like milk and yoghurt) and I start every day with a two egg omelette - I’m afraid I couldn’t give up eggs if I tried.

[Dizzy9 in reply to Fruitandnutcase]

Hi Fruitandnutcase, how have you found the block and replace regime? Are you,still on it and T4 and T3 levels normal now?

[Fruitandnutcase in reply to Dizzy9]

I found it really good. There didn’t seem to be any uncertainty about dosage. Once the block part (carbimazole 40mcg a day) had worked it was just a case of replacing it with levo and the dose was just raised throughout the year I was being treated.

Even that was funny - the guy I saw first said my hospital used the ‘quick’ treatment, then said it would take a year - I remember thinking ‘that’s the quick way?’ But he was right, it did take exactly a year.

On the whole I felt very well once it got going, there was the odd hiccup when I needed my levo dose increased but apart from that it was good.

[Dizzy9 in reply to Fruitandnutcase]

That's really helpful. My teenage son was diagnosed last September and is currently being titrated with carbamazole,now down to 10mg. He got a referral to another Trust,where they are suggesting block and replace. Am concerned about making the switch when his levels are stable right now and he's feeling so much better but the plan seems to be do it for six,months (the quick one!) then remove meds to see if in remission. He's keen to try it, as he is starting uni this autumn. Sounds like you are off it and in remission?

[barb62]

Thank you for your comments. I am not due a blood test for a few weeks yet but I am going to try and bring it forward

[Phoenix605 in reply to barb62]

It takes time for a dose change to fully assimilate so the recommended test interval is 6–8 weeks, however, most docs suggest 3 months im guessing to save money. Even the levo leaflet says less. Do your best to insist on 2 months (or suggest 6 weeks and settle for 8!) as increases are only 25mcg at a time and that extra month can cause unnecessary delay especially if you end up needing a higher dose. Unfortunately it is a bit of a rollercoaster at first as you body adjusts to the much needed extra hormone, keeping to the shortest test intervals possible at first does help to minimise the troughs.

Go onto the main TUK site and have a look at the various guidelines there, they will give you a good basic grounding, many GPs are poor with thyroid disorders so you need to learn as much as you can as quickly as you can so you can insist on propper treatment from the beginning.

There is a symptom checker on the site and you probably have a few you didn't realise were connected, note your symptoms so you can report improvements, having some positives to report or to be able to say these improved when you raised but have now slipped back can be helpful in encouraging the GP to give you the raises you need. If you are too negative they have been known to say no point giving you more as it doesnt help so the symptoms must be caused by something else.

Try and avoid just saying you are tired all the time or cant lose weigh these just get brushed off. Be quantitative, I used to enjoy 10 mile walks but now get exhausted after a couple of miles, i used to do well on 8 hours but now wake up tired even after 10. I am exercising and only eat 1300 calories a day just to stop my weight rising. These type of examples are far less likely to be brushed off or blamed on other causes, eg kids, age job, especially if you can say nothing else has changed.

Hopefully you have a good GP but dont stick with a bad one who wont work with you. If you havent already, get your electronic record turned in so you can access your test result prior to GP appt, that way you can post for advice until you get more familiar with what should hapoen and what your GP is likely to try and suggest. It also saves the arguements with reception who say results are ‘fine’ when you need (and are entitled to) the actual numbers.

[rosserk]

Hi Barb62, I am also new to Levothyroxine. I was started on 25mg and felt great for about two weeks then it just stopped working and I felt worse than ever. My doctors refused to retest me until I hit 6 weeks and it was torture. At 6 weeks I was back in the normal range and they refused to increase my dose. It took me a further two weeks to get an appointment to argue my case and get an increase to 50 mg. Again I was fine for about two weeks then I was back were I started again with the doctors making me wait another 6 weeks to be tested again. It was also 6 weeks from the date of increase so 8 weeks in all. I’ve just had my 3rd blood test on Friday and I know if I’m still in range there’s very little chance they will increase my dose again. I don’t have an appointment for two weeks so again it will be 8 weeks before I see a doctor again. The entire thing is a nightmare! I hope you have more success than me.

I’ve also just sent off bloods for private testing because my doctors only test TSH. I’m hoping my test will show T3 is not in range which will give me an argument to present to the doctors.

Kindest regards 😜

[Fruitandnutcase in reply to rosserk]

That’s where my daily diary of how I was feeling throughout my treatment helped plus how it related to the amount of levo I was taking. I usually lasted about four weeks before I needed an increase but I felt so awful I didn’t want to wait until the six weeks was up.

First time I needed an increase in levo - my doctor said she couldn’t do it, it had to be increased by my endo. She prescribed amitriptyline to tide me over. It worked a little and calmed down the worst of my symptoms - I felt as if I was becoming hyper again, pounding heart etc. I took the amitriptyline for long enough for my symptoms so subside and I had stopped them by the time I saw my endo who rolled her eyes when I told her about the amitriptyline and increased my levo.

Next time I got similar symptoms I went back to my GP - showed her my diary she still wasn’t too keen to increase my levo herself but I argued that I had felt exactly the same last time I needed an increase and that I had felt better once my dose was raised and that if it was raised again I was fully expecting to feel better this time too.

I was able to put my case forcefully enough - plus I had my diary of symptoms and doses as evidence - for her to let me take a bit more levo - so I alternated between 75 and 100 mcgs until I saw my endo - the endo was perfectly happy with the increase and I felt well again.

I sympathise with anyone who needs an increase before their next endo’s appointment is due.

[rosserk in reply to Fruitandnutcase]

Fruitandnutcase, I’ve never seen and Endo nor is my doctor likely to refer me. My results are due Monday but I doubt I will get a call if the results are in range the doctor will review them and write no change on my notes ! Then it will be two weeks wait before I see anyone to argue for an increase. It’s an absolute nightmare, I’m absolutely confused why any doctor would leave a patient in such dispair and not try everything they can to help. 😭

[Fruitandnutcase in reply to rosserk]

Possibly because he’s one if the “I’m a doctor, I know best” brigade.

That’s the trouble with getting anything done about your thyroid, as far as I could see the NHS don’t go in for ‘fine tuning’ and as I said to my GP ‘therange is so vast that to be outside the range at either end you would have to be seriously ill’. It is quite depressing really. I always feel lucky that I was overactive because doctors have to so something about you fast and you get to see an endo. Hyper or not though, once you’re ‘within the range’ you are considered ‘fixed’ even if you aren’t at your optimal point within the range 🙁

Hopefully your private tests will be useful. Are they testing vitamins B12 and D, folates and ferritin as well as antibodies? You need all of these to be well up in their ranges to help your thyroid.

I managed to reduce my thyroid antibodies (I’ve got Graves Disease, in remission) by going totally gluten free. I was diagnosed with inflammatory arthritis which was yet another autoimmune condition so I decided I wanted to do something and I knew that Hashi’s patients had had success with being gluten free so I felt I had nothing to lose. I don’t know if I feel better but I feel that my body must be better without them.

Hope you’re u get that increase soon - or even better find yourself a new and more sympathetic doctor.

[rosserk in reply to Fruitandnutcase]

Fruitandnutcase, hi ! Thanks for taking time to respond to my comment. Yes I’ve had the thyroid ultra with medichecks but still haven’t had the results back from them or my doctors. It will be really interesting to see if the results are comparable. I will post a new thread when I eventually get them because I will need members to advise me on what they mean. I’m not holding my breath that I will get an increase and I’m guessing I will still be in the ‘normal range’! 😭

[Fruitandnutcase in reply to rosserk]

Good luck with it all. At least if your vitamins and minerals are low you can do something about that yourself. It really is so stressful isn’t it.

[rosserk in reply to Fruitandnutcase]

It is indeed, it’s brought me to the brink of desperation. I still haven’t heard anything from my doctors surgery they would have phoned if I needed a change in dose and they haven’t !

[Fruitandnutcase in reply to rosserk]

Hopefully you will have more of an idea when your private test results come back. Have you contacted TUK for the list of thyroid patient friendly practitioners? Might be worth giving that a try. Meanwhile try to stay positive even though you are feeling really downhearted.

[rosserk in reply to Fruitandnutcase]

Fruitandnutcase, I’ve posted my results here

healthunlocked.com/thyroidu...

If you’re interested I’d welcome your comments. Doctor told receptionist I’m normal! So no change in dose!

[Fruitandnutcase in reply to rosserk]

Have replied on your other post.

[barb62 in reply to rosserk]

How did you get on

[rosserk in reply to barb62]

Hi barb62, it was like I said my doctor refused to increase my dose. My test showed my TSH had increased from 2.9 - 3.7 but he told the receptionist to tell me dose was adequate. I ignored the doctor and started taking 75mcg and booked appointment for two weeks later with different Doctor. She increased my dose to 100 because I wasn’t feeling any bettter in the 75 mcg. I’m now 2 weeks on 100 mcg and feeling crap again! I’ve 4 more weeks to wait for next blood test.

How are you doing?

[barb62 in reply to rosserk]

TSH has reduced to normal vitamins look ok too, but at the moment I feel pretty crap. shoulders, head thighs all aching. Am sure it is something I am eating. Gluten free soya free not much dairy but probably a little too much sugar!!

still on 50 levo but am wondering if I am converting to T3 efficiently. Another trip to the Doctors!!!! had enough!!!

[rosserk in reply to barb62]

Have you had a full thyroid panel with medicheck?

Also I find I can’t tolerate carbohydrates. I feel absolutely lousy if I eat to any carbs.

I feel ok for a few weeks after an increase in dose bu5 then I feel crap again! 😭

[Fruitandnutcase]

Why indeed? Don’t ask me - no way I could ever live without eggs, as I said in my comment above I start every day with a two egg omelette.

My comment about eggs was in response to Princesselle - in her reply to the original poster (that’s the post before mine) she mentioned something about a book she is reading - Thyroid Health - Medical Medium - saying ‘ no dairy and definitely no eggs’.

It wasn’t me who said not to eat eggs I said I couldn’t imagine not eating eggs.

If you want to reply to Princesselle click on reply under her post and your response will go to her.