Is there a light at the end of the tunnel?..

[Hypo_juan]

I posted on here a few months ago around November time about being hypo and explained my journey to where I am at now. To recap - aged 16 hyperthyroid, radioactive treatment and became hypothyroid by the age of 19. Was on medication (levothyroxine) for some years until I stopped taking it (stupidly). I developed arthritis in my spine, brain fog, poor balance, irritation to certain food, muscle aches, exhaustion.. I would wake up in the night sweating, feeling sick and dizzy suddenly for no apparent reason...the list goes on. At one point I thought I had MS, but after a few tests this wasnt the case. Eventually in November I ended up in hospital where my thyroid results were 150+, as my GP put it 'off the scale'. I was put back on levothyroxine at 25mg which has been increased to 75mg. New years eve I had some type of fit and went back to hospital. The doctor didnt know what caused it and suspected it to be due to a possible urine infection that I was treated for. Since November there has been no more than maybe 2 days at one time where I have felt well enough to do things. I feel sick most days, have palpitations almost every day and end up in bed by 7pm just wanting to sleep to not feel ill anymore. All I keep being told is 'it will take a while to get better' but then I read online posts about levothyroxine (medications) fixing your thyroid range but not actually making you feel any better. I'm just incredibly fed up and would do anything to not feel like this anymore. I have a daughter that I wish I could feel well enough to take out and do things with but I just feel like I'm miserable all the time. Please can someone tell me that it can get better.

[SeasideSusie Remembering]

Hypo_juan

I was put back on levothyroxine at 25mg which has been increased to 75mg. New years eve I had some type of fit and went back to hospital.

So all this happened after going back on Levo in November - just a few weeks then.

What was the time line for increasing from 25mcg to 75mcg?

Were you retested after a dose change? We should be retested 6 weeks after a dose change and there doesn't seem to be enough time to have done that.

Did you go from 25 to 50 to 75mcg?

Did the brand of Levo stay the same, or have you had a change of brand, or maybe you are taking 2 different brands to make up the 75mcg?

What brand(s) are you currently taking?

What are your current test results and when were they done?

[Hypo_juan in reply to SeasideSusie]

You'll have to forgive me as I cant remember specifically how long I took the dosages for. I was put on 25mg and also iron tablets in November, I was rechecked sometime after and was told my iron levels were good so could stop taking those but increased to 50mg of levo. Whenever it was I had another check up I was increased to 75mg. Since November I've been to hospital 5 times for a variety of different things, chest pains, urine infections.. so along the way my thyroid results have been checked by the doctors in hospital and the last one said it was within range. However I felt like death and after a visit to my GP he said the doctor at hospital was wrong and my last result was 58. I had a print out of this but not to hand. Im due another test in March. As for the brand name of the Levothyroxine I have always had the same packaging. I know this isnt of much help but when i return from work i will update with the details. Thanks for your response

[SeasideSusie Remembering in reply to Hypo_juan]

OK, so if you can fill in any details later that would be good, i.e. brand of Levo, test results and reference ranges from your print out. If your Levo packaging has always been the same, have you always had the 25mcg tablets so when raised to 50mcg you took 2 of them, and when raised to 75mcg you took 3 of them?

Iron result is also important. As you were given iron tablets, doctors are generally only interested in getting a patient back into the reference range, whereas the reality is that half way through the range is the optimal level. So it's possible you're still too low where iron is concerned.

[MaisieGray]

When you "read online", you are reading only about/from those who aren't optimally well. The real world is populated by many more people who take Levothyroxine and are very well and happy, and living their lives, and don't understand what the online people are complaining about! 😊 Another important point is that of those who aren't optimally well, many have no problem with Levothyroxine, their problem is that their Drs aren't giving them enough of it. Then there are people whose conversion of T4 to T3 is compromised, whether genetically, or perhaps because their nutrition is poor for example, but it hasn't been acknowledged, so that the Levo is fine in so far as it goes, but it needs to be accompanied by T3. Then there are people who have an intolerance to one of the inactive excipients in their tablets, which is readily resolved by swapping to another brand. So the number of people who actually don't feel well with the active element of the Levothyroxine is actually quite small, proportionate to the large number taking it. It may be that you are not yet optimally medicated, coupled with the fact that you became quite unwell whilst you were not taking your meds and so yes, you do have to give it time for things to improve. It isn't a quick fix. Meanwhile it is important to have 6 wkly blood tests and your dose be adjusted as necessary, until you are optimally well and your symptoms have abated - although remember, you have arthritis of the spine, which will likely impact how you feel. I have kyphoscoliosis and deterioration of the full length of my spine, which also gives me left groin and leg pain, which can be very wearing, even if my thyroid health is good, for instance.

[Hypo_juan in reply to MaisieGray]

Thankyou for your reply, that's quite reassuring to read. I have an appointment booked with my GP on Monday because I was supposed to be referred to an endocrinologist back in November but still havent had an appointment come through. Sorry to hear about your bone/spine issues too, it can definitely have a knock on effect to your quality of life especially when it hurts to sit down and stand up! I'm 30 and I sometimes feel like an 80 year old! 😬