Hi everyone was wondering if anybody on here suffered with the pituitary gland not working. I was diagnosed with hypothyroidism over 12months ago and started to take 50mcg of thyroxine my Tsh came down very quickly and the then lowered the dose to 25. After only a few weeks was back to docs with loads of symptoms so they upped the dose again.
To cut a long story short eventually I went to see and endo last week because they just can't get the dosage right and tbh I came away feeling very despondent, she did a very basic examination told me they don't test T3 as it's not necessary, also that she would look at the pituitary but if test came back ok for that there was nothing more they could do so would probably put it down to Me/Cfs. I'm 51 years old and so tierd of not being able to participate in my life!! Any advice please as just don't know what to do or where to go from here.
Many thanks
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lfcred
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The above link will take you to previous discussions on the Pituitary Gland on this forum. Hopefully something helpful there....
I'm not surprised they cannot get the dosage right. Why did they lower the dose back to 25mcg. Someone does not know what they are doing 50mcg is only a starter dose and it should be increased every 6 weeks or so in 25mcg increments until your symptoms have abated. Doses should not be constantly changed as this can cause so much harm. It can take several weeks for the benefits of an increase to be felt.
Your Endo saying the testing of FT3 is not necessary is also nonsense. T3 as you know is the active hormone and needed in every cell of your body....did you ask her why it does not need testing ? Take me with you next time - I'll sort her out Check out Low T3 syndrome on the net - it will soon be a recognised condition. But of course not if they do not test for it !
Do not accept a diagnosis of ME/CFS - you need full and thorough testing of the Thyroid FIRST. Could you go privately through Thyroid UK ? Money well spent.
You will also need Ferritin - Folate - B12 - Iron - VitD - tested. These all have a role to play in your thyroid and general health.
Alternatively holiday in Crete - go to a walk in Haematology Clinic - have the tests you want - have the results nicely typed up within a couple of days - then buy the products you need OTC at the Pharmacy around the corner. Job done.
I am not a medical person - just someone who has travelled the bumpy road to wellness. Click onto my name to read the edited profile
You will soon be well - sadly we cannot rely on the Health professionals so we have to take control....
Thanks so much for your reply, I have been following a lot of posts on here and everyone seems to be on much higher dosage than me yet the last bloods I had my Tsh was 0.05 T4 normal range, I've had vit D and folate supplements and noticed when taking the vit D I felt much better for about 5 weeks sadly it didn't last. It's been over 12 months now of feeling awful and so fatigued every day is a struggle to drag myself out of bed!
Oh by the way she said they don't test for T3 because it's alway normal and that there is no disease that stops your body turning T4 into T3 and that was the end of that discussion. I now understand why so many of the other people on here are so frustrated.
It's not uncommon for dose to be adjusted in the first few months to find an optimal level but if dose is adjusted according to TSH results it is likely to go up and down like a yo-yo.
Ask your GP receptionist or practice manager for a printout of your recent thyroid results with the lab ref ranges (figures in brackets after results) and post them in a new question. Members will advise whether you are optimally medicated.
The goal of Levothyroxine is to restore the patient to euthyroid status and for most people this will be when TSH is just above or below 1.0 with FT4 in the upper quadrant of range. If your TSH is high in range and FT4 low, it means you are undermedicated and a dose increase will help relieve symptoms. Read Dr. Toft's comments in Treatment Options thyroiduk.org.uk/tuk/about_...
Thyroid patients commonly have low ferritin, vitamin D, B12 and folate which can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms. Ask your GP to test and post the results and ranges in a new question and members will advise whether you need to supplement.
Thanks for your reply clutter I know the last results for tsh were 0.05 and that was taking 50mcg but T4 is always in normal range, my doctor said I was over meditated hence the drop back to 25mcg and then symptoms get worse they never go.
I have just finished a course of vit D and folate so they should be fine. I had bloods done this morning so when I get results I will post them. The endocrinologist I am seeing is now checking for pituitary problems I wondered if it was because the dose of thyroxine is so small yet they're saying I'm over meditated.
lfcred, TSH 0.05 is low, but not suppressed. TSH being slightly below range doesn't mean you are overmedicated if FT4 and FT3 are within range. What is the FT4 result? The 'normal range' is very broad and being at the top or bottom of range will very much affect how you feel.
If 25mcg is too low and 50mcg too high your GP could prescribe 25mcg/50mcg alternate days.
TSH is supposed to drop in response to thyroid replacement. The TSH of some people can drop quite low in response to relatively little replacement. If that is the only reason your endo is testing pituitary function you shouldn't be worried about pituitary dysfunction.
Ifcred, it proves the point that low TSH doesn't mean you are overmedicated. Ideally T4 will be >17.5. If you read Dr. Toft's comments in the link I posted above he says some patients need low/suppressed TSH in order to get FT4 high in range to feel well.
Ask the endo to increase Levothyroxine to 50mcg. GPs don't usually interfere with endo dosing while you're under the endo's care.
VitD is replete 75-200. Most people are comfortable with vitD around 100.
If your TSH is suppressed on 50mcg levo then it is possible that you will never get a high enough dose of levo prescribed which will eliminate your symptoms.
You may have some degree of pituitary failure - not enough to get a diagnosis of secondary hypothyroidism, but just enough to suppress your TSH so that you never get adequately treated. Something similar happened to me - I was told I had borderline underactive thyroid in the early 90s, and was still untreated and considered to have only subclinical hypothyroidism in 2013. I've been treating myself since then, pay for my own tests, and refuse testing by the NHS.
You really need to know your FT3 but since the NHS won't test for it very often you may have to pay for tests yourself. Info about testing can be found on the Thyroid UK site, and you can also get discounts on the price :
Another thing to think about - TSH has a circadian rhythm. It is at its lowest in the afternoon and at its highest during the night. To get the highest possible TSH result (which is what you need to do to avoid having your meds reduced) you must always get thyroid tests done under the following circumstances :
1) Don't take any thyroid meds for 24 hours before the blood draw.
2) Get the blood draw done at the earliest possible time - preferably before 9am.
3) Don't eat or drink before the blood draw, apart from water which you can drink freely. Being dehydrated should be avoided.
How does the above advice compare to how you got your own tests done? Were they done in the afternoon, after meds, and after food? Because if they were it could explain the low TSH.
I'm diagnosed secondary hypothyroidism, have had the MRI of the pituitary and that came back ok.
The problem is with secondary hypothyroidism, the TSH reading cannot be relied upon. As for whatever reason your pituitary isn't releasing enough thyroid stimulating hormone. You have to treat on the basis of the patients symptoms along with Free T4 levels and Free T3.
In my case I seem to be converting Free T4 to Free T3 very well, just I'm not producing enough Free T4. My symptoms sound very similar to yours.
I think the main reason many don't test for Free T3 is cost... One trick you could try is to say to the nurse drawing the blood if Free T3 has been requested on the form as the Endo requested it.
50mcg is a minute amount and chances are you'd feel worse on that amount due to down regulation.
What were your results prior to starting on medication?
Were your TSH levels within normal range/low prior to treatment?
I've had the me/cfs diagnosis for past 26 years! Finally, after begging for MRI brain scan, a 3cm pituitary tumour was found! Pit not working very well after my op last January. Shout if I can help xx
Hi Loo44 sorry to hear you've been messed about too but reading some of the posts on here it seems that is the norm.
It's very very frustrating and upsetting, can I ask you if you had trouble with your sinuses, and also neck pain and headaches as they are driving me mad and also my feet they are so painful and walking is a nightmare.
No problem with sinuses other than hay fever. Yes to neck and head pain, that was the tumour though. No painful feet. Have you been offered a brain MRI scan? Big hugs x
No I have only just got to see endo last week she has asked for some blood tests and I had them done Tuesday.
I had a head scan done because of sinuses I get excruciating earache which goes into my face I had this done in 2010 it showed a grey area in the sphenoid which they put down to sinusitis, it's never got any better and has me a bit paniced tbh. I've lost a lot of my sense of smell and taste I also have mild sleep apnea I feel like I'm falling apart. How did you eventually get diagnosed and have you had the opp and if so how are you feeling now?
I truly wish you well and hope you are feeling much better, it's awful when life seems to pass by without you participating in it and it's OK for these specialists and Dr to fob us off cause it's not their life's that are affected.
Hope to speak to you again and thanks so much for your reply it's much appreciated. X
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50mcg is only a starter dose and it should be increased every 6 weeks or so in 25mcg increments until your symptoms have abated. Doses should not be constantly changed as this can cause so much harm. It can take several weeks for the benefits of an increase to be felt.
Check out Low T3 syndrome on the net - it will soon be a recognised condition. But of course not if they do not test for it !
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