Confused about symptoms: Hi Everyone, I'm newly... - Thyroid UK

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Confused about symptoms

trman profile image
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Hi Everyone, I'm newly diagnosed with hypothyroidism . My father also has it and it runs in my family. I'm 48 and suspecting Ive had this most of my life since I've Had to work out 5 day's a week for 30 years straight just to have enough energy to function on a minimum scale. Finally after 30 years it got to the point where working out wasn't giving me enough energy and got tested . My TSH was 6.2 and the doctor put me on 50mcg of levoxthyrine. After 4 days of 50mcg it kicked in and I was feeling great and flying high for 3 days, then I crashed and now feel worse then before I started the med!!. I went from 50mcg to 100 mcg in about 3 weeks and I'm still exhausted. The doctor said it was Very rare and unusual for the medication to do this. Anyone else been down this road?

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SeasideSusie profile image
SeasideSusieRemembering

trman

It takes about 6 weeks to feel the full effects of Levo, when starting and when having a dose change. It can take many months to feel well after starting Levo with retesting and increases in dose (in 25mcg increments) every 6 weeks. It's early days for you so don't expect too much yet.

To be honest, it would have been better to stick to 50mcg for 6 weeks, retest, increase by 25mcg, retest 6 weeks later, increase by another 25mcg, etc.

The aim of a hypo patient generally is for TSH to be 1 or lower and FT4 and FT3 to be in the upper part of their respective reference ranges if that is where you feel well.

It would also be a good idea to ease up on the exercise for the time being. Hard exercise uses up T3 and at the moment your FT4 and FT3 will be pretty low. Gentle exercise such as walking, yoga and swimming will be better.

marsaday profile image
marsaday

Exercise is a common way to boost metabolic activity as you will understand.

When you supplement your own thyroid production you will unbalance what the body is trying to do naturally to provide the energy you need.

The initial reaction is positive but what actually happens after a few days is common. Your ft4 rises and so tsh will lower. This will have the effect of lowering t3 conversion a little. So you can end up feeling worse.

You need to give the body time to adjust to the new t4 level and start working out how to process this new supply.

It is a tough one. Something to try is cycling the t4 up and down. See what happens if you miss the t4 out for a day or two. Prob go back to 50mcg as well.

Increases want to be slow. There can be a danger where t4 goes up to fast for the body to cope with and so tsh shuts down and you end up with a pooled t4 supply in the system and a switched off tsh which affects conversion to t3.

in reply tomarsaday

Hello trman,

I was diagnosed with hypothyroidism over 18 months ago but had no symtoms & felt perfectly fine so was very surprised by the diagnosis. Doctor put me on 100mcg of levothyroxine. First 2 weeks felt fine then WHOOSH the worst I've ever felt - morning headaches, palpitations, hot flushes, high blood pressure, diarrhoea, feeling scared & anxious but didn't know what of & worst of all dizzy spells which is no good as I had to drive most days! I promptly came off levothyroxine after a month of feeling bad & told the doctor where to shove his medication. Not taking anything at present but feeling great with still zero symptoms! Just goes to show that levothyroxine is not suitable for everyone as we are ALL so different.

Best wishes.

marsaday profile image
marsaday in reply to

This is nothing to do with levothyroxine.

This is everything to do with altering the balance the body is carefully managing. We often cock it up with supplementation.

Many people have very high TSH levels and feel totally fine. If the doc finds out they will get them on some thyroid replacement.

So prior to treatment TSH is 50, Ft4 is 10, but FT3 is 5. This shows the body is struggling to produce enough T4 BUT it is over compensating by super converting the T4 to T3 and so the all important T3 level is high in the system.

Now give yourself 100 T4 and suddenly your Ft4 is up at 17 and TSH has throttled back to 5. Ft3 is now 3.5. You have more T4 in the system, and so the TSH has dropped down and so conversion to T3 is reduced. Now you have lower levels of T3 in your system and so you feel ill.

This is a very simple explanation of what can happen and doesn't take into account the adrenals reaction to different levels.

You really need to go very slowly on the T4 starting on 25mcg and see how this goes. You would take 25mcg for a few months to see what was happening and then get a blood test.

Longer term people who are doing fine with a high TSH will eventually start to feel bad, but how long this will be i don't know because i don't think they study this type of patient. It could be, you do fine for 20 yrs and when you get to 60 you actually stat to really need some artificial T4.

Treepie profile image
Treepie

You were probably given a much too high dose given you had no symptoms. Suggest you look at Thyroid UK web site at the symptoms that can arise so you are forewarned.

As I said Levothyroxine is NOT suitable for everyone - one size does NOT fit ALL! 😕

in reply to

Hi raywaites, I was put on 75mcg of Levothyroxine a few months ago and felt as sick as a dog! I also told the doctor I won't take the meds unless it was lactose free. They then gave me 75mcg of another brand which I haven't taken. I feel much better without it too and won't take the meds.

trman profile image
trman

Thanks everyone for the prompt help. The last 2 days got much better and I believe after reading all these posts that my that my doctor put me on to much meds starting at 50mcg And raised it to 75mcg in within the 2 weeks I started. since I complained about how weak I was, She was about to raise me to 100mcg in the 3rd week as I was still feeling worse than when I started the meds , but I put the brakes on once I read these posts. All this happened with out checking my blood tests post diagnosis. Probably would have been better to start at 25mcg and retest after 4-6 weeks and maybe I could have avoided the hell I went through. I believe my body couldn't process that much hormones and it backfired and made me terribly tired as the meds never had a chance to stabilize . The good news is I'm feeling well for 2 days now And I'm hoping the roller coaster is over and I'm stabilized. I'm hesitant to go back to 50 mcg as some posts suggested I do because I'm finally feeling better. The first time I took this medication I felt good on day 4-6 then crashed. Now I'm at day 21and I hope the tiredness doesn't repeat. I was reading on levoxthyrine's website that states it can take up to 3 weeks to feel better. And at exactly 3 weeks I did. Crossing my fingers and toes here.

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