The painful waiting game: My good news is that I... - Thyroid UK

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The painful waiting game

Coachgeorge profile image
16 Replies

My good news is that I was able to take a trip to see my family. There were many ups and downs but I was there. I spent a lot of time in bed but I was able to see everyone and visit some.

I’m home now and still having lots of ups and downs throughout the day. I push myself whenever I can. Today is day 11 on 75 mcg of levo and 5 mcg of T3. The shakes and weakness are almost unbearable but there are moments when it subsides. I believe what you all tell me....I have to be patient and stay the course.

It’s a very painful journey. I write this to say thank you for the support and to remind others, who are struggling, that we will get through this! It is frightening but a better life is ahead.

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Coachgeorge profile image
Coachgeorge
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16 Replies
Lalatoot profile image
Lalatoot

So glad you got to be with your family. That is a big boost.

Batty1 profile image
Batty1

You shake? Do you split your T3 or do you take it with your 75mcg t4? I know 5mg of t3 doesn't seem alot but it can be for some, splitting the T3 might help with shakes

Coachgeorge profile image
Coachgeorge in reply toBatty1

I do have the shakes. I do split it into two doses. I’ve been very sensitive to it from day one. I take an antihistamine about an hour or so before just in case it’s the fillers. I’ve changed doses so many times and never waited long enough for anything to work. Guess I’ll just deal with it for a few more weeks. Today is day 12 on 75/5. Thank you

Batty1 profile image
Batty1 in reply toCoachgeorge

CoachGeorge,

Do you "split" the T4 and T3 in half or do you take half of your T3 with the entire 75mg T4 and take the other half of T3 later?

shaws profile image
shawsAdministrator

You should begin to improve more if doctor is kind and knowledgeable. I've always taken my dose of whatever hormone replacement I've been on once daily. It then means you don't have to wait till stomach is empty if you take more than once daily. T3 saturates the T3 receptor cells and it then sends out 'waves' throughout the 24 hours. I've found it suits me.

naturalthyroidsolutions.com...

Coachgeorge profile image
Coachgeorge in reply toshaws

I tried taking all at once when I first started. Still had the shakes. I’m very inpatient and have changed my doses too frequently. I’ve been told to stick with a program for 6 weeks and then evaluate. It’s miserable but so is switching it up. Terrible disease. Thank you

shaws profile image
shawsAdministrator in reply toCoachgeorge

When symptoms begin to resolve, you will feel much better.

Coachgeorge profile image
Coachgeorge in reply toshaws

I have to believe! It’s such a tricky road. I’m not used to being ill and not having my doctor have the answers. It’s been eight months of hell. Thank you

shaws profile image
shawsAdministrator in reply toCoachgeorge

Slow and steady and having the support of a forum where many have had similar experiences is helpful and supportive for those who have a struggle. First with doctors who seem very uneducated or who restrict us to a certain TSH result and most seem to think that 'somewhere in range is fine' when we need it to be 1 or lower.

Coachgeorge profile image
Coachgeorge in reply toshaws

After I found this forum, I started sharing information with my doctor. I can’t say she’s been 100% on board, but she’s coming around. I’m in the US so I don’t have to fight many of the battles others confront everyday.

Coachgeorge profile image
Coachgeorge in reply toshaws

My TSH was out of range. I’ll be interested to know where it stands with my text draw. I’m hoping we are making progress with my t3 and 4. 🤞

Batty1 profile image
Batty1 in reply toCoachgeorge

TSH out of range? Too high or too low

Coachgeorge profile image
Coachgeorge in reply toBatty1

Too high

shaws profile image
shawsAdministrator in reply toCoachgeorge

Quite a number of Researchers have found that many do well when they are given a combination of T4/T3. I've also read that a 4:1 or 3:1 combination works well.

Coachgeorge profile image
Coachgeorge in reply toshaws

Thank you. I can say I’m better because I’m out of bed and moving around a bit. I’m at 75/5 right now and waiting for my next draw. I’m sure I’m still under medicated but I’ll wait it out.

shaws profile image
shawsAdministrator in reply toCoachgeorge

It would be good if we felt well shortly after we began to take thyroid hormones. It is slower than we'd like with gradual increases until symptoms are relieved. Many doctors think that once the TSH is 'in range' that we're on a sufficient dose and seem not to understand that the aim is all symptoms to be relieved.

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