help with hyper / hypothyroidism

[dizzy864]

Hi everyone, I'd really appreciate some advice.

After getting over shingles and I believe Covid by mid March, I had about ten weeks when I was really well. I was better than I'd been for the past five years. Lots of energy, made a quilt and several bags. It was really great. Life was fun again. Unfortunately, it did not last. About five weeks ago, I noticed that I was hungry a lot of the time and I was also doing a lot less but feeling tired all the time. I also had trouble sleeping - couldn't get to sleep and I kept waking up through the night and struggling to get back to sleep. I usually sleep for nine hours or so with no trouble. I've had a pain at the right side of my neck below my ear. This has been consistent - uncomfortable rather than painful. I've had some pain on the other side of my neck but not so bad and not always there. I think I can see a swelling on my thyroid gland but my husband says that there is nothing there.

I thought I'd become hypo. I believe I have hashi's. After eight days, I was wondering if I should increase my levo. I've been on 125 mcg levo and 60 mcg lio for about 18 months. The next morning I woke up and found that I was very hyper. I have never had this before. My heart was racing, I was sweating profusely, starving hungry and really tired. I took up ddp yoga back in early March and had been doing well with it. Now I had to stop as my heart rate was far too high and sweating far too much.

I reduced lio to 55mcg and did get a very slight improvement. After a few days, I reduced lio again to 50mcg. A few days later I felt very hypo and put lio back to 55mcg. I think this was a mistake as I got really hyper again. I put lio down to 50mcg again. There has been an improvement. I am still sweating too much. I'm struggling with yoga - my heart rate is still too fast. I'm starving all the time. I'm too tired. I feel odd.

Is this a hashi flare? I've never been hyper like this before. I've avoided my gp. She does her best to help but doesn't know enough about the thyroid. I believe she would order me to have a blood test, which would tell me what I already know that I'm over medicated!!

Should I reduce lio again? I would prefer to reduce levo but I reduced lio because it's faster acting. I'm concerned about reducing it again as 10 mcg is a big drop already.

Any advice would be greatly appreciated.

[fuchsia-pink]

I'm not sure it's good for you to be deliberately over-medicated over the long term. It's also not great to keep chopping and changing your daily meds - but it sounds as if a reduction would be a good idea. I can understand not wanting to go to your GP - who probably wouldn't do all the blood tests you should be having anyway. but it may be helpful to have the full range of recommended tests done privately once a year - ie TSH, free T4, free T3, thyroid antibodies, ferritin, folate vit D and B12 - so that you know where you are, especially on nutrients.

EDIT just seen you post of 4 months ago when you were on 100mcg levo and 60 mcg lio and thinking about reducing levo and going lio-only- and had your full blood results. So you increased levo back to 125 after that instead?

[dizzy864 in reply to fuchsia-pink]

Hi I was only on 100 Levo and 60 lio very briefly after a blood test and seeing an endo. I was very hypo on this and my go agreed to go back on 125 Levo which I d been on for 18 months before that. I was never deliberately over medicated! I have always felt better at top of ranges.

My gp was very opposed to my going lio only so I didn’t try it.

Chopping and changing bothers me too!

I was on 60 lio and 100 Levo for over 12 years. It’s only last 5 or 6 years I ve had a problem. I was so hyper this time , I had no choice but to reduce lio. I have never felt hyper before. Even when my levels were above range five months ago, I did not feel hyper. I don’t understand what’s happened or what to do about it.

I have bloods done on nhs regularly. I find results puzzling as they re not consistent. I really don’t want bloods done now. I know I’m hyper . I don’t want the high results on my records as I ll be told to greatly reduce meds. I m assuming this is a temporary problem and I will become hypo again

[fuchsia-pink in reply to dizzy864]

It's tricky to get the balance right, isn't it. I like my levels nice and high too - but am lucky that I don't need as much as you to get there, and can keep things stable. greygoose is very wise - and knows a LOT about Hashi's flares, so I'd follow her advice. Good luck x

[greygoose]

If you're having a 'Hashi's flare', it's not that you're over-medicated in the general run of things. It's just that you have temporarily 'gone hyper', due to the dying cells unloading their stock of hormone into the blood. Probably the best thing to do, if you feel that is the case, is to stop your thyroid hormone completely, for a couple of days, until you feel hypo again, and then restart it. Hopping around from one dose to another is not a good idea.

You're right not to go to your doctor, they just don't understand how Hashi's works, because they don't learn about it in med school. So, we're completely on our own with that one.

But, I would suggest that you do get private testing done, as fuchsia-pink suggested. That way you'll get a better idea of whether you have Hashi's or not.

[dizzy864 in reply to greygoose]

Thanks for your reply. I did wonder about stopping lio but thought that would make me too ill. I did not consider stopping Levo as I thought it would take too long to have an affect.

I did have an anti body test done a couple of years ago. It was normal. Gp refused a second test but did agree to consider it in the future. As anti bodies fluctuate I am reluctant to pay for it. This episode does make me reconsider it!!

[greygoose in reply to dizzy864]

I would suggest stopping both. If the levels of thyroid hormone in your blood are high, stopping T3 won't make you ill, it'll probably make you feel better. Which is a good way to judge whether you're having a Hashi's 'hyper' swing or not.

[SlowDragon Administrator]

Could be low vitamin levels

Really want to test thyroid and vitamin levels

Important to get these tested...vitamin D, folate, ferritin and B12

[dizzy864]

Thanks for your reply. I had vitamins tested towards end of last year. All were within range but lower than I would have liked. Bit D had gone down inspite of considerably increasing my daily dose six months earlier.

I supplement 20 mg gentle iron, 4000 is vital D 3 with K2 Mk7, B complex with folic acid +bit C, zinc 70mg, vit C 500mg

I also have 3 Brazil nuts for sileni every day and magnesium in my daily bath

I already rattle. Unfortunately, I don’t seem to absorb any of them as I should as my levels barely change. But D actually went down.

I don’t know what else I can do to increase vitamins as I m vegetarian and absolutely no way that will change.