Fed up. Fed up of feeling like this and fed up of my Endo. Fed up of him being so focused on my tsh and the only symptom he ever takes note of is fatigue. Every other symptom I have is not relevant to him.
How do you all keep going? I know we have no choice but to keep fighting, but some of you have been dealing with this for so many years!
Finally spoke to my Endo this week after being ignored for the last few weeks. He'd been on leave. 100mcg is clearly too low for me. 100/125 alternative days, I felt no different, but on 125 daily, initially I felt much better, then slumped backs to normal and actually Id say I feel worse now. He wants me to find a happy medium lower than 125 daily but higher than 100/125 alternate days. Is that even possible, practical?!
He also wouldn't agree to blood tests, says I'm to wait till June.. My last ones were November /December when I first upped to 100/125. So I've ordered my kit from Medichecks for peace of mind..
Rant over. Thankyou for listening!
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JUUJOO
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In December ~ (after 6 weeks on 100/125mcg) you had :
TSH 2.25 [0.27 -4.2]
fT4 16.5 [10.8 -25.5]
"He now wants me to try 125 dose daily to get me higher in range. He also added that in 4-6 months time, if there is still no improvement, we can talk about adding in an alternative thyroid medication... Would this be the bioactive T3?"
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So is he asking you to reduce a bit from 125mcg without seeing any tests on 125mcg ?that seems seems odd .
Yes it is feasible to fine tune dose between 112.5mcg (100/125mcg) and 125mcg ... you just do eg 5 days 125/ 2 days 100 =825mcg / week (divided by 7) = 119mcg /day .
But without seeing any blood results from 125mcg it would be daft to reduce just yet. Do your bloods first .... (24hr from last dose /9 am test/ no breakfast ) then decide whether to follow his advice or not...... based on those results and how you feel.
Feeling an initial improvement that then tails off after a few weeks is quite common,, and it often means the dose needs increasing a little bit more..
what was his reason for suggesting you now reduce a bit ?
did you report any symptoms on 125mcg that could be interpreted as overmedication ?
We all 100% understand about the "Fed up of this malarkey/ Fed up of this Endo"...
" Hobson's Choice" though isn't it .. keep going or sit down in a heap and cry ... and sometimes "sit down and cry" is necessary ..
but sooner or later we realise we're just getting a cold bum and decide we may as well get up again and struggle on round the next corner, cos you never know what's round it till you go there .
It does sound hopeful that this guy at least mentioned an alternative if you're no better in few months ... that must mean there is some hope for an NHS trial of T3 .. so i wouldn't give up on this guy just yet .
Thankyou for your reply. I feel shakey most of the time now, whereas before I would feel shakey when I was due to take my thyroxine. Anxiety which I had with graves has returned, palpitations have returned and I just feel on edge and stressed for no real reason. Also I just feel tired, the dose increase is really messing with my sleep and I just wake constantly. Prior to Rai I slept solid like a baby, rarely had a sleep issue!
The brand has changed a lot in 6 months, although after a long conversation with the pharmacy, they have agreed to mercury where possible as they said its easier to get. So I've had that for the last 2 months or so.
Many of us have been there, worn out the T shirt, and gone our own way, so I feel for you. It is so frustrating trying to live when all they seem to care about is a number in a box.
I thought there was something about testing 3 months after a dose change? 6 months is too long, especially if you are not feeling well. Your TSH should be around the 1 mark, and your T3 is low. Have you thought of asking for a trial of T3?
It is a good idea to get the private test - come back when you have the results and we can help further. In the meantime, sending you a hug.
Thankyou x I get the feeling they are all a bit worn out at the hospital, the letters that normally take a couple of weeks have been taking a couple of months.. My tsh was over 2 so he wanted to get me lower, but is happy to keep me stringing along till June when he will test my blood. I had blood tests today, so will post results in the next few days.
Its was shocking to me when I had my thyroid removed how horrible thyroid patients get treated …. They just don’t see thyroid disease as a real problem.
Thyroid problems are very hard for medics to take care of, there are just too many variables. Endocrinologists are supposed to understand the thyroid but many of them have risen through the ranks doing diabetes. With diabetes they just have two variables to juggle, sugar and insulin - easy peasy right? Most people on this site can name at least eight variables off the top of their heads which apply to the thyroid system and we are not the doctors so imagine what it is like only knowing about TSH. I like to think about it as our wellness is the "best fit" of all of the factors, the problem is TSH is an outlier, but that is most important to medics for misguided reasons. They try to fit the whole enchilada to include TSH and a solution just doesn't exist! - and that manifests itself in a sick miserable patient. The whole matter is completely unfair to the patient. The answer is further education of the medical profession, especially those specialising in endocrinology, but like many other things there are certain topics in your education that you just don't like and so do not do that subject. Thyroid endocrinology is like that, it is the poor relation of the profession.
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New and fed up
So fed up and so confused 😢 Have I been misdiagnosed? 
pregnancy levels, can someone have a look?
