Endo has reluctantly agreed to give me a blood test to see if my pituitary gland is working properly (to rule out secondary hypothyroidism). If no problems are found there he will increase my dose of t3 to 5mg twice a day and reduce my t4 to 50mg. If this does not work he told me there is nothing else he can do. He said he had never seen results like this before (with patient complaining of being symptomatic - weight gain, tiredness, poor concentration/memory and pains in hands, knees, calves and ankles). He will refer me to the Chronic fatigue syndrome clinic as there is nothing else he can do. Any one else had this happen to them?
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feelold
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Feelold, I think you may be undermedicated as both your FT4 and FT3 are low in range despite your low TSH. I would certainly reject a diagnosis of CFS while your FT3 is so low. What medication are you taking?
Dr Toft states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
Hi Clutter I am on 75mg of levo and 5 of T3. Was on 125mg of levo when I first went to see him. All him seems to be bothered about is getting my TSH unsuppressed. I am going to have to get strong and tell him how it is, go in armed with lots of evidence and my husband. Thanks for replying.
Feelold, TSH 0.09 is low but no where near suppressed. Suppressed is 0.03 and under. T3 is 3 x stronger than T4 so it's usual to reduce T4 by 50mcg for each 20mcg of T3 added. 75mcg/100mcg T4 plus 20mcg T3 will undoubtedly suppress your TSH but should improve your FT4 and FT3 and most important of all improve your symptoms.
So you are taking a tiny amount of T3 and a starter dose of T4, your TSH is very low and so is everything else? if you were unmedicated, this would point towards a pituitary issue, yes, but you are on meds ...
Does this chap not realise that your TSH will be low because of the T3 you were taking, and if you were taking enough to make a difference to your symptoms, your TSH would be fully suppressed?
I'm with Clutter, I think you are under-medicated and if he diagnoses you with CFS and tosses you on the scrapheap while he is not medicating you properly, then we will induct him into the Honourable Order of Endonobs and you should make a formal complaint!
When I went to him initially I was 125mg of levothyroxine only and symptomatic but not putting on weight as quickly as I am doing now. He told me at the time that he went by the TSH results but was willing to give me a trial of T3 if I could get my TSH unsuppressed. This is why I am now on 75mg of levo and 5 of T3. If anything I feel worse. I don't believe I have CFS, I feel fobbed off with his excuses and will fight this. At the time I was in shock. I am taking my long suffering husband in with me next time and lots of evidence on the incorrect use of the TSH, along with pulse and temperature readings from now until then. If that fails I will report him.
Thanks Ansteynomad, its nice to know I am not going mad.
Do I read this right? 125mcg of levo was suppressing your TSH, so he reduces the levo and adds a smidgeon of T3 which then reduces your TSH which just makes him unhappy again and you more symptomatic?
That sounds like a plan (not).
My TSH suppresses at the sight of any medication and was suppressed on 100mcg levo, but my FT4 was only 14.1 (9-26), so I am satisfied that my TSH is unreliable. Do you happen to know where your FT4 /FT3 were on 125mcg when you were still symptomatic?
Having been diagnosed with CFS myself on three occasions while the NHS chose to ignore bottom of the range ferritin, below range vitamin D and low in range B12 and folate, as well as rising TSH and low in range FT4 and FT3, I would not accept such a diagnosis again in the face of test results that show that you are not being properly treated.
So he reduced your meds in total. Probably so he could "prove" that T3 doesn't work. I'd go back to the same T4 you were on before and add the T3 to that. If still not right after a month or so, up the T3. If necessary, buy your own. To get more T4, just say you lost the packet and get another prescription.
I have spoken to my husband about your suggestion and have decided I am going to give it a go. I have some spare T4 from all of the forced reductions so should be able to keep going until I go back in 3 months. Hopefully by then I should be feeling better and prove to him that this is what I need to make me feel better. Thank you Angel_of_the_North.
Watch out for signs of overmedication, but it doesn't sounds likely if you still had symptoms on 125. If that happens, I'd reduce the T4 slightly to 100. Others may be able to give better advice. You may need to up the t3 to 10, but give it time.
Your symptoms and levels sound ever so similar to mine, I've been unwell for years. Finally think I might be getting somewhere but all hinges on my MRI of the pituitary. I had it yesterday but have to wait till my Endocrinologist gets back from holiday before I can get the result.
I've had to go down the private route, enough is enough of the NHS.
I would ask to have your cortisol levels checked, prolactin, glucose and Insulin checked as well.
My cortisol level and prolactin is raised, this could be due to the anti depressant I'm on or could could be due to a pituitary Adenoma. Only real way of telling is to have an MRI carried out.
I would insist on an MRI and if not and if you are able to get it done privately.
I'm intending to complain to my surgery if my scan shows anything up.
I to have also had an MRI scan of the pituitary, I'm waiting for the results and the scan was taken around 4 weeks ago. In the records my endo is wanting to rule out secondary hypothyroidism. what this means for me, I'm not sure.
I'm on 125mcg of thyroxine but personally I feel this is not doing much for me, I started on 50mcg 10 years ago.
Yet my current results suggest I should be well. I really don't get it nor do I know what to do know.
My results in May were: TSH 0.1<, FT 18. However cortisol is borderline at 290, but he stated he's not that concerned about that. My testosterone is up and down and again he has deemed this normal. LSH is below normal which isn't right and think this is how I ended up going for a scan.
Oh I am sorry to hear you are going through the same thing Gsp177, it is horrible when they don't believe/won't listen to you. I hope you get sorted out soon. My endo has taken a blood sample to test my pituitary is working properly. Only if that comes up with any abnormalities will he sanction an MRI. So I will have to wait and see what the results bring. Did you have a blood test before your scan?
Many thanks, I've had blood tests for years but always been fobbed off, 2 years ago I asked to see some blood results and noticed my Free T4 was below the range it all started from there. I kept all my blood results from then on and when I went to see the endocrinologist last month I handed over the folder. That helped helped a lot I believe, you could see in black and white over a long period my thyroid wasn't functioning as it should be.
The only tests he asked for at this stage bearing in mind my GP had carried out liver function tests etc was the following.
Glucose,
HbA1c
Cortisol
Serum IgF 1
I'd already had my prolactin level checked on two occasions both times they were raised significantly. My Cortisol was also raised, as the endocrinologist said to me at the time, I'm probably best off having the MRI as well as the blood tests as they may come back inconclusive in which case I'd have to have the MRI anyway. It all comes down to cost sadly, hence why the NHS mess about.
Thank you Shaws for this information, I will take this in to him when I go back in 3 months time. I chose this endocrinologist from the list produced on thyroid uk. He was recommended as an endo who would give T3 a try, but maybe other people need to be warned about him for future reference.
The new paper has just been accepted so will probably not have been seen by a lot of Endos (whether they'll take notice is another matter.
You will have been disappointed with the consultation if he had been recommended so email louise.warvill@thyroiduk.org to tell her.
He has reduced your dose too low. When I was on 75mcg T4 - Endo reduced 50mcg of T4 and added 10mcg of T3. It had an amazing difference, i.e. roughly 10mcg is equivalent to 50mcg levo. So I was on 25mcg levo and 10mcg of T3.
Just for info. This is an archived link re T3. T3 is the active hormone and T4 inactive which has to convert to sufficient T3 and it doesn't always do this.
Thanks Reallyfedup123. I am going to increase my T4 as I have some spare and then hopefully when I go back in 3 months I can prove to him I have been under medicated. If that still does not work I will try NDT. I also need to get my ferritin up as when last tested 1 year ago I was only at 40.
Ask to have your growth hormone level to be checked !!! Your symptoms sound much like mine and have just been diagnosed with severe deficiency & am waiting for treatment to start. There's also a lot of good information on the Pituitary Foundation website.
Thanks halifaxlass, will do and hope all goes well with your treatment.
Hi Feelold, I've been there, had all the simptoms, doctors will never help....... that is WI-FI ( EMF sensitivity) weepinitiative.org/arey... WHAT IS ELECTROHYPERSENSITIVITY. Switch your wi-fi in your home, a specially at night, or better go wired. An Amalgam fillings (mercury) may increase the symptoms. henryspink.org/dental_a... . Read this all, please, befor you go to a doctor. Take care.
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Could I have Hypothyroidism?
Could I have some help with results please?
What!! Endo just called me-i dont think he has a clue.
