Anyone have an issue with pituitary gland? It seems I am producing high levels of prolactin and have been told it may be a tumour on my pituitary.
I was diagnosed hypo about 2 years ago tsh just above normal ( my GP was good ). Further to this I wanted to see whether I was hashimotos so had blue horizon tests which showed I wasn’t.
Could my hypothyroidism be a result of this pituitary issue? Any info would be appreciated 🤔 x
Hello. It could be. I don't know anything about it, but I have just been referred to an endocrinologist because my journey with hypo isn't usual either. So I shall be asking them to test me properly for pituitary problems.
Are you getting on well with medication?
Thanks for responding FancyPants
I would defo ask them about the pituitary I am doing ok on 100mg thyroxine my TSH is 1.66 (0.2-4.2) however it was under 1 the last blood test.
I also have issues with low estrogen and was told I was menapausal last year I am only 45 so was shocked by this and since then became pregnant (miscarried). So I am pretty sure my pituitary is dodgy I have awful headaches and weird body jerking when I lie down to sleep.
Anyway it’s worth getting it checked if you have adverse symptoms like fatigue etc too. Good luck x
I don't get awful headaches. I do get migraines but I think they are hormone related. The fatigue is all physical and it's an enormous issue for me.
I'm afraid 45 isn't particularly young for menopause and it will upset your thyroid hormone needs. You are likely to be in perimenopause though, if you still have periods? The GP's test a hormone and declare us menopause, but we need to be period free for a whole 12 months before we actually are classed as menopausal. Before that we are perimenopausal and our oestrogen and progesterone are all over the place. Sometimes surging and others falling.
Lots of very helpful advice, and just a place to let off steam about life, on the Menopause Matters web site forum if you want to find out how other women cope with different problems.
High prolactin is associated with hypothyroidism
ncbi.nlm.nih.gov/pmc/articl...
ncbi.nlm.nih.gov/pmc/articl...
Can you add your blood test results and ranges
Did you have vitamin D, folate, ferritin and B12 tested as well ?
Hi slow dragon thanks for your reply
All my vit levels are fine and my TSH is 1.66 (0.2-4.2) sorry no T4.
Thanks for the links but if I am already taking 100 mg thyroxine (for about 2 years I think) then surely if it was secondary it would have nearly rectified the pituitary?
I’m going for an MRI tomorrow I’ll post my results for info - thanks Again x
Just TSH is completely inadequate. You must have FT4 and FT3 tested
You might have conversion issues, or DIO2 gene variation
Can you add the actual results and ranges on vitamins. Muscle twitching can be low magnesium, common hypo problem especially if vitamin D is low
Vitamin D for most needs to be around 100nmol
B12 and folate right towards top of range
Ferritin at least half way in range
All thyroid tests should ideally be done as early as possible in morning and fasting. If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Is this how you do your tests ??
You can't rectify the pituitary. Certainly not with thyroxine.
A TSH of 1.66 is a little high for someone on thyroid hormone replacement but impossible to tell if the pituitary has anything to do with it without seeing the FT4 and the FT3 and comparing them to the TSH.
But, the MRI will tell you more, and then there are lots of other pituitary hormones to be tested. 
TSH is rather high, you need FT4 and FT3 tested. Plus vitamin D, folate, ferritin and B12
Likely to need to do privately
Just wondered how you got on with your mri? I have mine today x
It was okay Dee had it on Sunday but no results yet ! I’ll post when I get them. I’m thinking now that poss I don’t have pituitary issue since my doc said it’s v likely high prolactin is caused by my anti depressant velafaxine.
I really want my results to know one way or the other person if no pituitary problem I’m going to get blood tested again privately for everything then look at intro t3 with advice from peeps on this forum. I just don’t want to accept how I feel is CFS! The weird body jerks the shaking the awful headaches and my mood being awful sometimes just can’t face another day feeling this crap just gotta keep on for my son and family.
Anyway hope yours went well ( sorry you didn’t ask for my life story but lost it a little today after my visit to unsympathetic doc yesterday )
Take care x
Sorry for the late reply SlowDragon
I did get a thorough blood test with blue horizon and all appeared fine with vits but perhaps I am not getting sufficient for hypo.
I take prescribed vit d and iron.
Unfortunately I can’t find these blood results but am planning on doing another so will post then.
Thanks for your interest x
Antidepressants can lower TSH so you really need a full blood test
You are entitled to if all your blood test results
You can possibly register for online access but if this is not available then ask for print out if all blood test results and ranges
They are no longer allowed to charge patients for this (since May 25th - new EU rule)
TSH over one is too high for many
Once we are on levothyroxine TSH is not enough. FT4 and FT3 both need testing
Vitamin D needs to be around 100nmol
B12 and folate towards top of range
Ferritin at least half way in range
If you have high Thyroid antibodies (Hashimoto’s) then strictly gluten free diet helps the majority of patients
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, 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)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to have high enough FT3
Pituitary problems may affect your TSH soT3 & T4 needs to be tested. If you are found to have a prolactinoma then treatment can be either with drugs or if it is causing problems pressing on the optic nerve then you may need surgery. Of the pituitary problems then a prolactinoma is better than either agromegaly or Cushing's which I had. Hope you get it sorted!
Yes it could, Although it is unusual for TSH to rise above range when the problem is with the pituitary.
My hypothyroidism was discovered during blood tests seeking a reason for nerve weakness in my left hand, about 15 years ago - my TSH was normal, although my T4 level was low, so my doctor refused to prescribe levothyroxine for over a year, saying it would right itself. Eventually she consulted the local endocrinologist who not only got her to prescribe the levo., but also ordered scans of my thyroid and my pituitary gland. It seems that for some reason my pit. gland had "switched off" producing enough TSH, but otherwise all seemed normal, so I have been on levo. ever since!
It is just possible that my thyroid gland may have been disturbed during an operation on my cervical spine, where the surgeon went in from the front, moving soft tissues aside to get at the vertebrae and discs.
I appreciate the worries you must be having over a possible tumour - I hope they discover if there really is one, and, if so, treat it.
I'm not a medic, but have you heard of the pituitary-hypothalamus-thyroid axis. Basically they all interact with one another, and if one not functioning correctly it can have a knock on effect. In my experience, no one ever queried WHY I had become hypothyroid, I was simply given a top up of T4 and sent on my way, to deal with the polysymptoms we all suffer with in one form or another. Do let us know how you get on please. Best wishes.
Hi i could give you some of my Tsh at last blood check it was 72.12. Getting more bloodresults thursday hopefully its came down.
Hi blue petalls
Re head pressure yes I do I feel like I have a continuous sort of low grade migraine. I had 2 blood tests for prolactin and it had increased further on the 2nd one. Surely they should have checked yours at least twice. I don’t think they should ignore high prolactin because apparently it can be very bad for you causing inflammation in the body, affecting the immune system and there is evidence of a link between it and breast cancer. I would try and get another test if poss.
I don’t have my MRI results yet - went to the docs on tues saw not my usual doc and she said the high prolactin was prob caused by the antidepressant I take (venlafaxine) and if that was the case there would be nothing else done and that my prolactin levels would just be left as they were! I couldn’t believe her response as my levels were significantly above normal range. And I have huge sore boobs, greasy skin, and regular crying episodes! I feel pregnant!
Anyway I’m going to see my own doc who is much better tomorrow and run it past her - it doesn’t seem right to leave your body like this !
She was pretty awful actually, condescending and clearly thought all my symptoms were in my head or due to depression! I was crying a lot and I think she thought I was crazy!
it was her that told me the meds I was taking would not be a cause of high prolactin a couple of weeks ago - appears she has changed her mind!
Anyway sorry for the rant ! But yes I have awful headaches and the body jerking and twitching is getting worse and I have now started shaking too. Couldn’t put my eyeliner on this morning it was like my 5 yr old niece had done it 😁
Hopefully I’ll get some answers it’s so hard I’ve been feeling really poorly for about 4 years now - been put on various ad’s and told I have CFS but I just can’t accept it my symptoms just don’t fit.
I’ll post with my mri results
Good luck x
Gosh I have so much to say on this! It took 15 years and five endocrinologists to diagnose me with Cushing’s disease. Cushing’s disease is caused by a tumor in the pituitary gland, is is called the master gland and the thyroid, adrenal‘s, and sex organs are responses to the hypercortisolism. Basically if you have Cushing’s disease or Cushing syndrome all of these systems could be off-balance. I had Nuro surgery to remove a tumor on the right side of my pituitary and three days later had the entire right side of the removed. Per my IPSS test results, I was secreting 4635 times a normal cortisol level. At the time I had no thyroid problems. After my surgery, I was told that I would probably become hyper thyroid and my blood glucose levels may increase and I would have to learn to deal with type two diabetes. That did in fact happen. It took a year and a half to recover fully from the surgery, and the thyroid issues with away and my blood glucose was in the range it should be. Unfortunately this March I found out that I have another tumor on what is left of my pituitary gland I chose to not have another surgery and take an experimental drug that will prevent over secretions of cortisol. This week I found out I am hyper thyroid! In fact my TSH was 7.14 and the top end of the range was 4.00! My endocrinologist told me that the medicine I’m taking for Cushing’s disease is actually showing an underlying thyroid condition. You are correct in saying they are related to one another. If there is an issue with the pituitary your thyroid will be hypo or hyper because of this. If you would like me to send you research from medical journals I’d be happy to do that. I’m a graduate assistant and student and I have access to any publish journal in the world. Please let me know what you find out. For hyperCoritsolism, The first two tests offered are a 24 hour urine collection and standard bloodwork of cortisol levels. This does not work! There is a dexamethasone suppression test and a salivary cortisol collection test. These two tests were the only ones that definitively showed I had a tumor. For some reason the four other endocrinologist I went to would only do the 24 hour urine collection. The Endocrinologist who diagnosed me with Cushing’s disease was the fifth endocrinologist I had been to in the last 15 years. He told me even having full-blown Cushing’s disease, The 24 hour urine collection and standard blood work for cortisol levels would have continued to show my levels were normal. I encourage you to talk with your endocrinologist about this. I’m very lucky that I have the top endocrinologist in my region if not the entire US. Knowing the specific tests ask for makes a huge difference! You are in the right track! Don’t ever let a doctor tell you everything is normal and let it go when you know something is wrong with your body. And unfortunately learned this the hard way. So I hope talking to individuals in these forums I will Individuals and their battle of these diseases, and how I’ve made it through them.
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