Advice on next steps & Professor Chatterjee

[Niks76]

Hi

I have seen my endo in Peterborough this morning who thinks my results are fine admitting that she is going mainly by the TSH. These results were whilst taking 125 levo and 20 T3.

TSH 0.65 (0.30 - 4ish - can't remember if it was 4. something as am remembering from reading the screen)

T3 3.6 (3.1-6.8)

T4 12.4 (12-22)

She has told me as my TSH is where it should be that there is nothing more she can do for me and asked if I'd like to see anyone else. When I asked if there was anyone she could recommend she suggested Prof Chatterjee in Cambridge.

I politely said that although my TSH did look better than previously, the T3 and T4 are both very low still and asked what could cause that to be the case, she couldn't really answer other than a virus and many other things can affect TSH. Does anyone have any suggestions? I know I need to get my T3 and T4 higher but she won't increase T3, she has increased T4 to 150. Before agreeing to me trialling T3 my T3 was not even in range.

The second part of my post is to asking whether anyone has seen Prof Chatterjee in Cambridge? Is it worth me being referred and travelling there to see him? Please let me know by PM.

Alternatively does anyone see a good endo in Peterborough that they would recommend as she said she can transfer me internally to someone.

Thanks in advance

[Clutter]

Niks76,

Increasing Levothyroxine to 150mcg will raise FT4 and FT3. It's not normal practice to increase Levothyroxine and T3 at the same time.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.3 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email [e-mail] if you would like a copy of the Pulse article to show your endo.

I believe it is Prof Krishnan Chattergee who works at Addenbrookes, Cambridge as you may get feedback about Dr. Rangan Chattergee.

Email [e-mail] for a list of member recommended endocrinologists.

[shaws]

How poorly educated are endocrinologists/doctors when they only look at the TSH (which is from the pituitary gland) whilst ignoring completely the FT4 and FT3 which should be towards the top of the range instead of bottom. When we add T3 into T4, the TSH will be low. I don't know why they are ignorant of this fact.

[Niks76 in reply to shaws]

I know Shaws, it’s so frustrating, I’m a year down the line of seeing her and now she wants rid of me. Happy to see someone else if I get better treatment but don’t want to be in the same position in another years time.

Thanks Clutter, my T4 has been higher but T3 always been low since they’ve agreed to test. I shall have a read of the link you’ve given me.

[shaws in reply to Niks76]

The following was written by an Adviser to TUK.

healthunlocked.com/thyroidu...

Before the introduction of levo along with blood tests we were diagnosed upon our clinical symptoms alone and given NDT which was increased until symptoms were relieved.

[Greybeard]

There was a copy of a letter from this doctor to one of his patients doing the rounds a little while back, the gist of it was that he supports the use of T3 but he doesn't support suppressing tsh (usually meaning less than 0.1). As your tsh is 0.65 by his standard it doesn't offer much room for further intervention. Are you following the usual advice for optimising vitamins etc?

[Niks76]

Thanks Greybeard63, frustrating as my T3 and T4 are still so low. She has asked that I have my bloods re-done in 4 weeks after my levo increase to 150 so guess I will have to see how that changes things. So frustrating, beginning to wish I'd not had my partial thyroidectomy 3 years ago now, the start of all these problems!

[Niks76]

Sorry missed your vitamin question, I do take vitamin d, k2, b12 and a b complex, have done for some time. I started them after my PT, when I went downhill very quickly and began suffering lots of muscle aches and pains.

[Angel_of_the_North]

Your free T3 is much too low in range for someone taking T3. TSH is not relevant really esp when taking t3 - the blood tests were developed for those on levo only. You'd expect low or even suppressed TSH, low to mid range free t4 and high but in range free t3 when taking T3, so you need an increase unless you are feeling well as you are. If you are taking T3 because you are a poor converter, I'd add more T3.

[Niks76]

I tried to tell her that Angel of the North and she admitted I obviously knew a fair bit about it (have read a lot since my op and diagnosis) but she wouldn't budge. I have increased T3 in the past, by self medicating and felt better than I do now so I know I do need more, just can't convince the doc!

[greygoose]

You do take all your hormone on an empty stomach and wait at least an hour to eat or drink anything other than water, don't you? And you don't take any other medication or supplement with it? And you leave four hours between your vit D and thyroid hormone? Because those results really look as if you're not absorbing very well.

[Niks76]

I take my Levo at bed time so don’t eat anything after those. It’s perhaps not always an hour with my T3 but I didn’t think it was the same with T3, am I wrong? I take vitamin D in the morning so nowhere near Levo, should it be 4 hours from T3 too?