GP scared me. Help understand results please.

[Tamzin27]

Hi all,

Following a total thyroidectomy 5 months ago, I'm still struggling to reach the right dosage of medication and optimum health. Maybe I'm being too optimistic about optimum health without a thyroid.

Since my surgery, I was prescribed 125mcg Levothyroxine which I took until about 6 weeks ago. I increased my dosage to 150mcg as I was feeling sluggish, down in mood and I thought I could get my T3 in the higher range. Had my blood test done last week and received a phone call from my GP yesterday telling me that my calcium level is still low. I stopped taking my Adcal tablets because I was having side effects from them. I also told her that I have increased my Levothyroxine to 150mcg. Oh dear! She wasn't pleased and told me that I am now at risk of having an angina. Well, that's scared me! Now, I don't know if I should carry on taking 150mcg or reduced to 125mcg. She's definitely scared me. I have no symptoms of hyperthyroidism and a few days ago I was thinking of increasing it to 175mcg. I have put on weight a lot since surgery. Thought it would help.

These are my results on 150mcg Levo:

TSH <0.02 (Range 0.30-4.80)

Free T4 13.8 (Range 7.7-20.6)

Free T3 4.6 (Range 4.2-6.9)

I was hoping my T3 would be higher in the range on 150mcg Levo.

Can you please advise me what to do? How do I know if I'm taking too much Levothyroxine. Her mentioning angina has truly scared me.

[riannabri]

Your GP should not be managing this your endo should, and as for the Angina that is caused from a heart related condition and NOT thyroid medication. You will know if your over medicated and from your results you are still low.

Take control here, tell her what you want this is YOUR body.

In the NHS there is something called patient led care and if she doesn't start listening to you change your doctor.

Where is your Endo in all of this?

if she doesnt work with you then take control yourself, tell her you are on what every dosage she wants you to be on then supplement with the extra yourself, either adding a little T3 or additional T4 until you feel well

[Tamzin27 in reply to riannabri]

My endo was ready to discharge me back in January and I begged him to stay on his book for another few months. So, I'm seeing him again in July. I will be emailing him later today because I don't want to wait until July. My GP does contradict herself sometimes and that's why I thought I would take matters in my own hands. But she scared me yesterday when she mentioned angina. I'm trying to get my T3 in the upper range but hard to do with T3 on it's own. Too scared to buy online. Will email my endo and see what he says. Thanks for your advice.

[riannabri in reply to Tamzin27]

Email your Endo and insist on an earlier appointment.

I am hoping your Endo prescribes T3?

FORGET her stupid comment about the Angina

Was your low calcium there before your thyroidectomy or Is your low calcium from Hypoparathyroidism or did it happen after your thyroidectomy?

[Tamzin27 in reply to riannabri]

One of my parathyroids was accidentally removed during my surgery. Since then I've been deficient in calcium. I was prescribed Adcal D3 and I was also on a massive dose of Vit D for deficiency of Vit D. Unfortunately I started having really bad lower back ache to the point where I couldn't sleep at night. As soon as I stopped these tablets, my back ache went away. I was either overdosing or reacting to the tablets/ fillers. My GP has now prescribed calcium on its own which I'll start tonight. Fingers crossed I don't get the pain again.

I tried asked my Endo for T3 before but he told me he couldn't because my GP and the CCG won't be happy with him. To be honest, I probably didn't insist enough. I didn't know much about it at the time, as I had not been on this forum long enough. Learned so much from hear. I also asked my GP for T3 and she said only my endo can prescribe T3. All playing games!

I will email my endo and see what he says.

[riannabri in reply to Tamzin27]

My endo prescribes T3 - Thats all I am on so insist and get him to dose it

Well if your GP said only your endo can prescribe it there you go you can go back to your endo and said your GP said only he can prescribe

The addition of T3 may be all you need to top you up

Your endo also needs to review your calcium/Vit D - its their job not yours

[greygoose]

Well, you're not going to get your FT3 any higher whilst your FT4 is so low. You do need an increase, and that might be all you need.

Was this test done after six weeks on 150? Did you test early in the morning, after fasting over-night, and leaving 24 hours between your last dose of levo and the blood draw?

According to your FT3, the most important number, you are not taking too much levo. Your doctor is only looking at your TSH, and jumping to conclusions. She doesn't know very much about thyroid, does she. Doctors seem to enjoy putting the fear of god into patients, in order to keep them in line!

[Tamzin27 in reply to greygoose]

Hi greygoose! You are right, my GP contradicts herself a lot. All she cares about is if it's within range, nothing else.

Yes, I had my bloods done just over 6 wks, early morning and 24hrs after last dose. I always take my Levo first thing in the morning.

Thanks for your advice.

[greygoose in reply to Tamzin27]

You're welcome.

[Tamzin27]

Hi guys! Just wanted to give you an update. Sent a long email to my endo and he replied saying that he unfortunately doesn't prescribe T3. He also said he wouldn't recommend increasing my Levothyroxine as a suppressed TSH can cause osteoporosis and atrial fibrillation. Feeling a bit down about the whole thing now. This is not what I wanted to hear. Thank you for your support from here.

[France1]

This all sounds horribly familiar. I find it all too exhausting to take in and argue with. If I were truly well nobody would mess me about like this.

I do hope something works for you soon (and me)

[Tamzin27 in reply to France1]

Bonsoir France1! I'm just so fed up with it. I truly thought it would be one pill no problem after my TT. I've just come across your posts and I can see you've been struggling for a while. The only good thing in France is that you have no problem getting prescribed T3. I'm begging my endo and GP to no avail. To be honest, I'm too scared to buy T3 online.

[France1]

We get the combined T4 and T3 tablets but not the T3 on its own. I have nearly bought it on line but ended up feeling like a drug dealer. I am not ruling it out, certainly cannot stay like this. Now I need to wait until we have been down the 'heart problem' route. I am sure there is nothing wrong with my heart - just my hormone levels but I have to do a whole load of tests.

The one thing here is that the service is quick and very well resourced and the cost of treatment is never an issue. Just need someone to find a solution.

Let me know how you get on

[Tamzin27 in reply to France1]

I'm reducing my dose of Levo to 125mcg from tomorrow but this time I'm going to keep a diary with all symptoms and how I feel. Good luck!

[Cazzingthyroiduk]

Hi Tamzin27, I know it's scary it's never ending tests, If your doctor tells you to take a prescribed amount of medication, you must try it and see how you feel. Keep testing the levels of mg and find out what you feel best with. I am still struggling with weight gain, I am going to eat healthy and do repeated floor exercise, just an idea . I hope your ok.