I think that I may have got over the first hurd... - Thyroid UK

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I think that I may have got over the first hurdle but have now started to doubt myself.

JennyC2 profile image
18 Replies

After a hard battle I eventually got an appointment to see an Endo yesterday. I had been told by my GP not to expect too much so I tried not to. My results are all within range but the T3 is 4.1 (3.1-6.8) and I was thinking that if I could persuade someone to prescribe T3 to bring me closer to the top of the range my brain fog and concentration might improve.

What a battle! I ended up in tears. He was a nice man with extremely logical arguments and he eventually agreed to a three month trial and I am to keep a diary of my symptoms during that time. So I achieved what I set out to. The downside is that now I completely doubt that I have the right end of the stick and maybe I am depressed or have something wrong with my brain. I hope this will pass and if the T3 doesn't make any difference then it is back to the drawing board.

I can only imagine how much harder it must be for others who are less well than me and I wish them all the luck in the world.

Thanks for listening. Jx

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JennyC2
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18 Replies
helvella profile image
helvellaAdministratorThyroid UK

Self-doubt is the order of the day in the world of the thyroid.

Hardly anyone gets identified and properly treated without putting quite some effort in. Given that so few are medically qualified, this means that they have had to assert themselves in a very difficult situation - right in front of a trained doctor, in a stressful appointment, and without any real support.

To come out of that without feeling uncertain, without re-examining the appointment, without questioning everything would seem unlikely to me.

Well done. It might or might not be the best possible outcome. Time will tell. But what it most definitely is, something far more important, is a step in the direction of taking more control. You have done it. Surely no-one will ever be able to say you didn't stand up for yourself and do what you felt you had to do.

Rod

JennyC2 profile image
JennyC2

Thanks very much Rod. You have made me feel better. Jx

tegz profile image
tegz

Ethically, he would not have prescribed the T3 without feeling that on balance it would do more good than harm, even though you had to fight for it! Are you taking any T4 and what was your TSH?

I hope it goes well for you.

JennyC2 profile image
JennyC2 in reply to tegz

This Tegz. Yes I take 100 Levo and my t4 is at the top of the range and my Tsh just inside the bottom. I think you are right about the harm argument. I argued that provided that my T3 stayed within range then I was happy with that and any risk was mine. Jx

Clarebear profile image
Clarebear in reply to JennyC2

I was in a similar situation to you, with a reasonable level of fT4 but bottom of the range fT3 whilst on 75mcg of thyroxine. I managed to persuade my endo to trial me on NDT and it has made all of the difference in the world to me. Your results are very similar and I think indicate a conversion problem, so hopefully the T3 is exactly what you need :)

How much T3 has the endo prescribed and has he suggested a reduction in T4? xx

JennyC2 profile image
JennyC2 in reply to Clarebear

Thanks very much, this sounds reassuring. I mentioned NDT but "there is no evidence.....!!!!" so I went with what I could get. It is really good to hear that it worked for you.

He didn't give me a prescription himself but has written to my GP so not sure what the dosage will be.

Wish me luck. Jx

Lemonpeelelulu profile image
Lemonpeelelulu

My bad cholesterol is And my TSHis 7.03. Free T4

My mother late deceased used 3.75 thyroxine most of her life. If this GENERIC. I am 71 and have few symptoms which include sudden flushes with heat and odd waves across chest between boobs. Suggestions? N8-22 oct.ot bothered just curious.

W B C 4. 0 = L

LPB 11.9 = H

NE. 1.6 = B

Do i need to be worried?

Is it generic? Pls reply. Lady 71

JennyC2 profile image
JennyC2 in reply to Lemonpeelelulu

Sorry but I'm not really sure. I think that you should post this as your own question so that people can see it more easily and someone will be able to help. Jx

Lemonpeelelulu profile image
Lemonpeelelulu in reply to JennyC2

Thanks Jennyc2 for bothering to reply. I am learning how to use this iPhone and have not advanced yet to the stage where HOW I post a question to the world. All a bit of a nuisance learning this new unsocial way of communicating. I'm about to throw it out of window. I feel better already! Ta! Will aim to get a 2 min visit to GP later. M

JennyC2 profile image
JennyC2 in reply to Lemonpeelelulu

Good luck. Jx

Angel_of_the_North profile image
Angel_of_the_North

Well, T3 is sometimes used to treat depression, so it looks like a sensible thing to have a trial of.

JennyC2 profile image
JennyC2 in reply to Angel_of_the_North

Thanks - I think that I have read that too. Fingers crossed. Jx

T3sortedme profile image
T3sortedme

Jenny

T3 made a big difference to my brain fog. It was one of the early indicators that T3 was making a difference. It may take a few days. I later found that my problem was conversion of T4 to T3, so later when I stopped taking the T4, I had a dramatic improvement (faulty T4 conversion can create reverse T3 which blocks good T3 getting to the cells to make energy). We are all different, so you cannot predict the outcome. Take your time and see if the T3 starts to clear your mind a bit. Learning how our body works and responds to treatments take time. Making notes is crucial. I use an iPhone app to measure my heart rate under normal condition and when walking the dog or after an uphill climb. I also check blood pressure every so often. I note energy levels (10% for very poor, 100% for feeling completely normal), headaches, mental clarity and how my limbs feel when I walk (heavy or not). Also note stress and any colds or illness as these can have a big influence. I go downhill for 3 or 4 days before the a cold appears (as though body fighting infection beforehand). I find it very helpful looking back and comparing it with what treatment level I was taking at the time. How much T3 are you taking and when are you taking it? Timing can be crucial. Did the endo reduce your T4 to compensate for addition of T3? Don't question yourself about taking T3 - its a great chance to see if it helps! Really glad you got the chance and pushed it. It may not work (which tells you something) or it may make a difference and be the start of the right route to a real solution. You need to find out! I look forward to hearing in a few days how you are getting on. Please respond to dosage and timing question.

PS Have you read Paul Robinson's book?

JennyC2 profile image
JennyC2 in reply to T3sortedme

Thanks - it is so good to hear a success story. I don't know what the dose is yet - he is going to write to my GP and send a copy of the letter to me. I did ask if he could give me a prescription but he said it should be GP cos they will be monitoring me. I will certainly let you know when I find out. Jx

shaws profile image
shawsAdministrator

Considering that T3 is required by every single cell in our body with the brain containing the most. We may not be converting enough T4 (inactive) into the active T3.

JennyC2 profile image
JennyC2

Thank you - I am hoping that this is my problem and the solution I have is a good one. Jx

Lemonpeelelulu profile image
Lemonpeelelulu

Newcomer and quickgoer: You all seem to know your stuff. All sounds v advanced. May I pass on a tip from 2 friendly doctors to my father who did not have a solution for the diagnosis. A tot of whiskey and 75g aspirin daily.

in reply to Lemonpeelelulu

Yes all this information is sometimes overwhelming, I'm often lost and in awe of others' knowledge, I'm just getting by - hang in there, and HUGE respect for using a smartphone (20 years behind you sweetie, & give up on that fandangled stuff for folks with clever fingers - except seeing the grandkids on Skype is handy! former programmer as far as I can remember!) don't be a quickgoer please, we need some tips especially about 'organic' blood thinners! J x

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