Hi all!
Does anyone have experience of getting tested for this in the Uk?
Sheehan’s Syndrome: Hi all! Does anyone have... - Thyroid UK
Sheehan’s Syndrome
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Ginny52
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36 Replies
•
When I really didn't know what was wrong with me, I found articles on Sheehan's Syndrome and it did tie in with my medical history. Doctors though generally have no idea what Sheehan's is. When I took my cat to the vets, I discussed Sheehan's with the vet & he knew all about it. I had a few bad miscarriages and one horrendous birth so thought I was a prime candidate for it. No doubt all those events, in my own case, moved me closer to a chronic illness. In the end, after two private blood tests, I have what looks like Hashimoto's Thyroiditis. I doubt there is an actual test for Sheehan's - I would imagine it shows itself as thyroid &/or adrenal problems. Apparently with Sheehan's breast milk doesn't come through and as I was able to breastfeed I moved away from the idea that I had that illness.
Sheehan's got my attention big time and I read voraciously about it decades ago. Prof Sheehan was a great man, discovering what it was causing severe illness and the deaths of new mothers. I read an online newspaper article recently about so many women in Africa still dying in childbirth; I'm sure Sheehan's has something to do with it.
Interesting about breastfeeding - I didn't know that - thanks. More reading. 😊
As far as I can see the best way to confirm a diagnosis of Sheehan’s is an MRI, and the nhs endocrinologist I went to refused this on the basis of cost. I have a private MRI request but can’t afford it.
My mega bad birth was in 1979, and after decades of chronic illness I demanded an MRI scan of my pituitary. I was told all was ok. But as either someone said, or I read, how do we tell what is actually inside the pituitary? But maybe an MRI scan can show what exactly is inside a pituitary, and not simply that it is all there? Hidden says her mother had pituitary, adrenal and gonad problems. I have/had adrenal & gonad problems - extremely low adrenals due to very longterm low thyroid and was born with half a uterus & only one fallopian tube. I did take hydrocortisone for a few years although now I think it has damaged bones & prematurely aged me, and also take a fairly high dose of T3 only.
What makes you think you may have Sheehan's Syndrome? Have you experienced a traumatic birth? Have you done a whole load of the usual blood tests to check for hypothyroid & Hashimoto's, adrenal / cortisol problems, also low vitamins, folate, ferritin etc. ?
In 1993 I had a miscarriage, and there was a delay of many hours getting an ambulance, further delay because the first hospital had no emergency gynae, lost 5 litres + of blood, (ambulance men’s estimate), further mess up led to not being given transfusions until a fortnight later- total clusterfuck and nearly died. Was never really well afterwards and became very unwell two years ago.
Have you had many blood tests? Have you seen the results?
In my own case, I went round in circles for decades wondering what was wrong with me, thinking back to all my bad illnesses (including septicaemia) and bad childbirth, miscarriages etc. Wondering if it was my pituitary, my growth hormones, something mega complicated. In the end it does seem to have been 'straightforward' Hashimotos, although of course it's not straightforward!
I think you are on T4 only? Maybe you have problems turning T4 into the usable thyroid hormone T3?
My problem is getting diagnosed at all. The NHS endo I saw refused tests or MRI on the basis of cost. I went to a private one, and he gave me a private MRI referral form, but there's no way in the world I can afford to pay for it!
I just read the bit where you demanded an MRI!
I'll try but I think he will just say no again
I have had blood tests which I was told would exclude pituitary hypofunction- I just stupidly took their word for it, but when I looked up the actual numbers, that is just not true. I don’t know whether they don’t know this, or they just think it unlikely that I will know (or which is worse). At the moment I’m getting t4 prescribed by a private gp, but I don’t find that satisfactory at all, and my normal nhs gp thinks I’m a mad person taking a drug I don’t need.
When I said blood tests, I meant all the necessary blood tests to check thyroid, antibodies, and necessary vitamins, iron etc. - all the tests that are constantly talked about by HU members to diagnose hypothyroid & hashimotos
I’m off to bed now, I’ll be back to bore you with the gory details in the morning! Night night x
Blood tests! My ft4 and Ft3 are right at the bottom of their respective ‘normal’ ranges, tsh suppressed, no antibodies.
Tell me about getting an mri- whereabouts in the country were you? I’m so fed up
When I had the MRI of my pituitary I was living in south west midlands & was sent to Russells Hall Hospital. It's certainly not a pleasant experience but I felt it was necessary... not sure if it actually proved anything much though.
If your FT3 particularly is right at the bottom of respective range it sounds like you need to get your hands on some T3. Have you considered either pressing your doctor to add some to your T4 or to get some yourself? In my own case, I was either on T4 which I couldn't convert (14 years) or on a very low dose of T3 (20 years) & really thought there was something else wrong with me. Once I was on 40mcg of T3 a day I got better. Must add - got much better after doing the AIP diet for 6 weeks and got my vit.D, vit B's, folate, ferritin, etc optimal.
Have you discovered Izabella Wentz? She is my hero... she was very ill with hashimotos, got herself better, is now so passionate about helping others that she sends out free e-articles on dozens of subjects. Go onto her website, click on every single heading and subject
amazon.co.uk/Izabella-Wentz...
Izabella sounds excellent, but the one thing I am sure of is that I don’t have Hashi’s (antibodies always neg). I think I have central hypo from Sheehan’s, but I can’t get the nhs endo to do tests. Pleading is probably better than threatening a complaint, so I suppose I should just start with that- I think a private mri is anywhere from £800 to £1500, no hope.
It is hard to get t3 up with Levo-my prescriptions are from a private gp, so t3 would cost all my limbs! I might buy some from abroad though, and just add a little to the Levo each day. Or perhaps ask my private gp what he thinks of NDT? (Have you tried that?) ג
Never tried NDT. I've got a faulty thyroid gene from one parent (heterozygous), proved via private DIO2 test, so am best on T3 only. Have you researched what the prescription(s) / treatment are if you can prove you have central hypo from Sheehan's ? You may find that it's the same or similar to all hypothyroid treatments. In my experience, the NHS tends to only do the same things for all hypo type patients... ie prescribe T4, T3 or NDT if pushed into a corner, or the patient buys abroad themselves. What is done for central hypo?
Mainly Levo, but I think you need to be sure your adrenal glands are fully functional, both to metabolise the t4 and in case of Addisonian crisis. I’m slightly concerned about that- I’ve had a couple of episodes of nausea/ abdominal pain/vomiting/fainting. I think the nhs endo might test acth, and I’ll make sure adrenal sufficiency would show up in that.
The private endo says you can’t get growth hormone therapy in England, although I think it may be possible in Scotland (NICE apparently won’t pay in England)
In later life my mother was diagnosed with Sheehan's syndrome for which she was on hydrocortisone treatment for over twenty three years.She used to say her medication was her lifeline.She passed away at 83years old in 1992.I remember that she used to be sent for by car to go to our local hospital to attend conferences in order for the doctors to learn more about the condition.
In her first year of marriage (1937) she miscarried.
I was born in 1941 and my mother was very, very ill,spending 64 days in hospital.....this being before the coming of the NHS and being during the war, my father had to be called home on compassionate leave from Yorkshire where he was serving in the RAF.
I still have the invoice for her long stay in hospital which was contributed toward by the RAF benevolent society.
She struggled through life never knowing what was wrong with her and never having a lot of energy.
In around 1968 she was taken in to hospital during a bout of flu as she was so poorly.
It was only then that Sheehan's syndrome was diagnosed.She had pituitary, adrenal and gonad problems. Hydrocortisone medication was started plus regular trips to the hospital.
I'm sorry I can't be of any more help as it was so long ago,but Sheehan's Syndrome is not a condition to be taken lightly.
My own condition is Primary Hypothyroidism but I have often wondered about getting a cortisol test.
Ginny52• in reply to
I think this is exactly what happened to me- I’ve felt terrible for so long
Ginny52• in reply to
Did your mother think it was the miscarriage that gave rise to the Sheehan’s or your (successful!) birth?
The only person taking it lightly in my case is the nhs endo, who I think actually doesn’t believe I could have been that unlucky!
• in reply toGinny52
I think my mother probably had problems from an early age.I remember her telling me that she only had a period every three months.I was born when she was 32 yrs old and was born into an age when adults didn't tell you much.......the children were seen and not heard era.
I was fortunate that my own two boys were born without any problems and I remember my aunt commenting that I didn't have the same problems as my mother.
I think my own hormone journey would require a separate post though.
Ginny52• in reply to
I’m thinking that if hydrocortisone helped her, she must have had adrenal problems secondary to hypopituitarism from the Sheehan’s. The only test the nhs endo will do for me is acth, although that may have been conditional on my stopping Levothyroxine- I will just have to plead, because when I tried that I got so ill I couldn’t walk.
• in reply toGinny52
I do sympathise with you searching for the right answers to your problems.
It is not an easy journey and seems to involve never ending adjustments to our treatment.I shall be going to my pharmacist this week asking why he switched my Levothyroxine to a different brand without saying why.
I'm not happy on it and need to get back to the one I have taken for several years!!
Ginny52• in reply to
I found that too- these brands are just not interchangeable, and yet doctors insist they are. Another version of al in your mind, or you feel ill because you think you’ll feel ill etc. So insulting!
• in reply toGinny52
I agree.They don't seem to have any idea.Mercury Pharma levo is different from Actavis as it has acacia powder in it which does not agree with everyone.
They need to study the patient's welfare.This condition is debilitating enough and needs treatment that helps not hinders the return to good health.
Ginny52• in reply to
Those are the same two that taught me that they weren’t the same only I think the other way round- Mercury was fine, but Actavis felt as if I hadn’t taken anything... all the symptoms started to come back!
• in reply toGinny52
That is strange......it just confirms that we are all different.
I must add that having suffered from Shingles this Summer at the height of the recent heatwave, that some of my symptoms may be due to the after effects of that,which I understand can leave you tired and lacking energy.
However,I can't help feeling that if I had been optimally medicated for my thyroid,I might not have caught the virus.
My FT4/FT3 have never been near the top of the range.
Ginny52• in reply to
I’m so sorry you were ill, and when it was so hot.....I believe very much that hypothyroidness leaves you vulnerable to infections- in the year before I began self- medicating I was in hospital with diverticulitis three separate times.
I’m off to bed now, but I’ll write in the morning
Night night x
It's well known by endo's specialising in Thyroid that Levothyroxine brands are not interchangeable
academic.oup.com/jcem/artic...
Always get paper prescription and make sure to get same brand every time
And yet the BTA insist they’re all the same! Bullies
• in reply toGinny52
I think my situation is probably partly my own fault.A few months ago my Actavis started being given to me loose in brown bottles which I was far from happy about.When I picked up my present prescription from my pharmacy and it had been changed to Mercury Pharma I should have questioned it.However,seeing it in packets I decided to go with it and give it a try.
Suffering the after effects of Shingles at the same time has somewhat confused my situation.I am only just managing to get back into normal routine.
It has not been a good year following my husband passing away last Autumn.
However, it is now time to get things sorted and gradually move forward...not easy.
Ginny52• in reply to
Marfit, what a horrible year. I’m so sorry.
I just went to the pharmacy- they had no MP, so I might have to try the Actavis again while I wait for them to order it!
It’s hard to bear in mind that this present moment is all we have when it feels rubbish. Sending you all my hopes and wishes, G
(I do wish I thought I could be a bit sterner when asking for my mri. Maybe I’ll just plead, it’s more in line with my craven personality)
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