I would love to talk to any of you with central/ secondary hypothyroidism just to find out how we're all doing?
x
Secondary ( Central ) hypothyroidism sufferers?... - Thyroid UK
Secondary ( Central ) hypothyroidism sufferers? Can we say hi to each other?!
46 Replies
•
Hi joesmum, diagnosed secondary here. How are you? I'm still on my way to getting a correct dosage as my endo is increasing me 25mcg every 2 months but I am starting to feel a little better, so I hope I'm heading in the right direction x
• in reply tostrawberrysorbet
Hi strawberry sorbet,
Great to hear from you.
My ENDO is raising me 25mcgs every 6 weeks. I'm improving but not there yet.
I'm currently taking 125mcgs levo and 15 mcgs T3
He added the T3 because I seemed to be a painfully slow converter but also because when I first went to see him my FT3 level was desperately low and he wanted to get some stuff into me quickly.
He's aiming for an FT3 level around 6.2 ( top of his hospitals range is 6.5)
It's so slow isn't it. I'm with a great NHS endo so feel very lucky. I'm sure we'll get there in the end!
How are your levels looking?
strawberrysorbet• in reply to
My endo doesn't really ever mention T3 levels. He does get them on the blood results, but he's only ever talking about getting my T4 levels up.
How did you find out that you had a conversion problem?
I'm currently around FT4 13.7 and FT3 4.9 This was before I went up my last 25mcg so I'm hoping these are higher now. I've just started to feel less fatigued and less depressed. In fact, feeling less depressed is probably the main improvement I've found... I still have terrible issues with constipation and this is the one thing which bothers me the most. I really hope this goes away once I get on an optimal dose.
Youre lucky to have found a good NHS endo. I had to go private as everyone dismissed my results and said I was euthyroid. My endo does both NHS and private work but made me do a TRH test before he would officially diagnose and treat me, even though my FT4 was below range.
NieuwOndaatje• in reply to
Hi, I'm new to the group and suspected Central Hypothyroid with low FT4 and FT3 and low TSH but not yet diagnosed as the Endocrinologists and GPs in the NHS seem to be less convinced of the merits of measuring anything beyond TSH. I'd be interested in any NHS Doctors and Endocrinologists that may have an understanding of CH from either a Pituitary or Hypothalamus perspective? There is so little understanding of the role of T3 and conversion issues from T4 to T3 here in the UK? Grateful for any insights you may have. Many thanks.
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Hi Strawberrysorbet, I am intrigued to know how you were eventually diagnosed? I have had a number of different Endocrinologists as there seems to be a high staff turnover in the NHS Endcorinology clinics here and also different opinions from various Doctors in the GP Surgeries. There seems to be a lot of inconsistency in the approach to diagnostics as well as which blood tests are actually requested. I rarely receive any details of T3 or rT3 in the UK profiles, which focus simply on the TSH and fT4? I wondered if you had any experience of the TRH test, which I know used to be a feature of the diagnosis of Central Hypothyroidism, and to distinguish between CH of a Secondary (Pituitary) or Tertiary (Hypothalamus) origin. Grateful for any insights and I'm also trying to look for NHS Endocrinologists that specialise in Thyroid Disorders, including CH in origin? Most of the practising Endocrinologists seem to specialise in Diabetes rather than Thyroid and I wonder if this is perhaps one of the reasons why there is so much uncertainty and controversy in protocols and treatments. It certainly seems to be an under-researched area of medicine and health, despite the increasing number of patients? Many thanks.
Hi - i have recently been diagnosed. Thanks to this forum i know the kinds of questions to ask my endo and gp. On 25 mg levo (2 months) and feeling better, but not there yet. Recent bloods are 1.24 (0.27-4.2) and t4 is 11.62 (12-22) (privately tested). Due to go back and ask GP to increase dose. It has been a difficult to get GP/Endo to see that that all is not normal. I think I have had this since childhood, but it is worsening now. However, now i know a little about this condition (thanks thyroid uk), i feel i can better direct my recovery 😊
• in reply toSherriscribbles
I believe I've had mine since childhood too. A pituitary/ hypothalamus that has been spluttering away that became much, much worse in mid life.
What I found with medication was that they'd add 25mcgs of levo. My FT4 would rocket to about 18/19 after about 6 weeks then would plummet back down to 11/12 again. My increases were about every 8 weeks but my Endo is speeding them up to every 6 weeks now.......I think he's sick of seeing me!!😁
He has said that he's aiming for the FT3 to be high in the range......
He also told me that central/ secondary hypo's tend to need higher doses of Levo to become symptom free.
strawberrysorbet• in reply to
Do they know why your FT4 would plummet back down Joesmum? I haven't heard of that before. Do they think it's something that just happens for those with secondary?
You're lucky you were diagnosed Sherri... I had similar results to you and was told it was just "normal for me". The Lab even started refusing to do blood tests my GP had requested because they had decided there was nothing wrong with me. Glad you've got a diagnosis and they are treating you!
Thanks for your message. I haven't been a member of this forum for long - i have learnt a lot, but am shocked how variable treatment is for this condition. I have seen some diagnosis guidance in the literature, but this is not always followed - i myself have been told all is well at least twice in the last 12 months before i have had to remind the GP of the diagnosis.
Hello,
I found out I have a pituitary adenoma three years ago. Despite "normal" range blood test results, I've had symptoms since 1979. I diagnosed my own secondary hypo, after reading about it on here.
I've been self-medicating with NDT since last year, & what a life changer that has been!
More recently, I've tried T3, but find it weak for the dosage on the box.
My GP knows, & agrees it's helped, as does another consultant I see, but I'm wondering if there's going to be fireworks when I see my endocrinologist in June, & how my recent blood results will compare.
Mel
• in reply toBadHare
Hi Mel,
your consultant may just be sympathetic.....
You've been taking NDT with the consent of your GP and making headway which is great.
It's amazing just how many people with central/ secondary are not diagnosed. I find it worrying to say the least.
I definitely diagnosed my own central when an endo kept treating me for primary hypothyroidism. My TSH had never been high but my FT's were both below range. So even endo's miss it.
Fortunately the NHS endo I have now spotted it as soon as I handed over my private blood tests. Yippee!!! I was a very poorly girl at this point and it has taken 18 months to get to my current dosage because I had terrible trouble raising the levo.
I would get the most awful psychosis when I tried to raise my levo so the endo had to go SLOW!!! Now I'm at the stage where I can finally raise 25mcgs at a time but I'm still a bit wary.
Interestingly my Endo didn't bat an eyelid about the psychosis......totally believed me......just said that I'm dreadful hormone sensitive amd that we needed to raise slowly......
I feel very lucky to have his support and expertise.
BadHare• in reply to
How were you diagnosed?
I swapped hospitals & endocrinology departments as the first was utterly incompetent. Whilst the staff at my current hospital are more pleasant, & haven't lost any notes or blood tests, they also ignored all my hypothyroid symptoms. Like many people state on here, it's very frustrating, to be told their TSH is normal, when they feel ill. I'm amazed that they seem to have no idea that secondary hypothyroidism exists, even whilst looking at my MRI scan!
The test they should do is for TRH, which involves some sort of compound that is no longer made, so I get the impression that health professionals stick their heads in the sand if a persons TSH is within their perceived range.
My GP didn't consent to giving me NDT, I told him in advance that I was going to take it, & had to explain that I wasn't wasting money on snake oil.
I'm glad levo is working for you now. I've two friends who have had issues taking it. It's a pity that T3 is so expensive for the NHS to prescribe. I took my initial dose very slowly, & only increased by a 1/4 tablet every two weeks, so it took months to notice an improvement, then had to start again after I tried a different brand.
It's sad that people with depression & worse mental health disorders are treated for & with the wrong medication, because doctors aren't trained in diagnosis. I'm on the FM forum on here as well, & point people in the direction of Thyroid UK whenever I read a post from someone with hypo symptoms.
From reading so many posts, you are lucky to have an endocrinologist that is sympathetic, & knows what he's doing! I've yet to meet one...
Mel
• in reply toBadHare
Mel,
Hang on in there.
I'm with my FOURTH endocrinologist.
Before transferring to him I was diagnosed as being primary hypothyroid by all the previous endos and treated according to my TSH which left me desperately poorly.
My GP then sent me to a fabulous endo on the NHS at my local hospital who looked at my blood work and said that I was immediately central/ secondary. I might even be tertiary.
My TSH was 6.2 but my FT's were both below range...way below.....I was very poorly.
My Endo didn't do the TRH test. It isn't always necessary to determine between secondary and tertiary hypothyroidism ie pituitary or hypothalamus as they are both treated in exactly the same way with Levothyroxine.
I had 3 years on NDT because I could not tolerate levoythyroxine at all. Until my nice Endo said 6.5 mcgs every 3 weeks! That much I could handle.
I've had 25 years on and off on antidepressants when what I really needed was thyroxine.......criminal......but I'm not alone...far from it which is a tragic and negligent and all those other words which inflame the soul.
I have had to make peace with my illness and its history particularly as I have 2 doctors in the family and not even they spotted it.
I have learnt to keep my own counsel, be guided by only those who know and care.
Thyroid UK has been invaluable.
X
BadHare• in reply to
You poor lamb!
They're not a bright lot, are they? I keep reading articles to the effect that we'd be effectively diagnosed, if we were ill >50 years ago. I've been treated, badly & ineptly for depression, diagnosed with FM, & had painful nerve block injections, all because of this ostrich attitude to thyroid hormones, & pharma companies having too much control over our healthcare. I'm wild as hell, as my symptoms were screamingly obvious since 1979!
I've never taken levo, but have some friends that don't feel well on it. Have you tried T3, to see if you're any better on that? I'm currently taking 25mcg, on top of my 1 1/2 grains of WP. It seems weaker, as it's the really cheap stuff, but I feel ok.
This website is a real life saver, & I wish I'd known about Thyroid UK in my teens. I've printed off a stack of papers & articles to show my pain management doctor & my GP. It might just save someone else's health, if they know what symptoms to look for.
Next up is joining more autoimmune dots...
Mx
faith63• in reply to
me too, fourth endo and they need to do growth hormone testing as well!!
20 years of anti depressants and terrible side effects..tried nearly everyone on the market.. and 12 years of benzo's like xanax, pulled off cold turkey, which caused me to develop Hashimoto's Disease. I hate doctors and am just very depressed, racing heart ill, non digestion of food, yet have an odd thick layer or thick skin all over..myxedema, possibly..dizzy and headachey.. and ill. I have not been able to get proper care by any of the 4 endo's or proper diagnostic tests for my damaged pituitary. It started at the end of 2008.
You can still get the TRH test Leverette (at least you can in the UK). I think the drug you're thinking of is Protirelin.
Thanks!
I'm not sure if it's worth it, when self-medicating has sorted the worst of my hypo symptoms.
Will taking NDT & T3 skew the results?
I intend to ask the consultant why they hadn't bothered, though they always obfuscate when I ask them anything! >
Mel
Just read some of your other posts, & info on TRH testing.
There is no possbility of me not taking NDT for 3 weeks, unless my order is late!!!
Nanny23• in reply to
Can you please explain difference between primary and secondary hypothyroidism. I am so happy you have a dr. Who knows what he's doing they are very hard to find stay happy and healthy.
Primary is where the problem is actually with the thyroid not producing enough hormone. When that happens your pituitary notices you dont have enough and tries to get it to produce more. It does this by pumping out more TSH so your TSH will rise and you will find your FT4 levels don't.
With secondary, there's a problem with either the pituitary or hypothalamus, so that although you have low levels of FT4 your pituitary cannot increase the TSH so it can't signal to your thyroid to pump out more hormone. If the problem is with the hypothalamus then you can't increase the TRH which signals for more TSH.
Either way you end up hypothyroid and needing the same treatment.
Thanks so much for the explanation. Seems secondary would be more difficult to diagnose.
I was primary hypothyroidism for about 10 years and OK on levothyroxine, then I gradually became quite ill but GP and endo kept telling me I was adequately medicated and it was all in my head etc. etc. I had private test done found my T3 was below range and T4 bottom of range, even thought TSH was 1.6. I had to go to a private doctor to get T3 prescribed. After 12 years of GP's and Endos going apoplectic with rage at my taking T3 none did anything anything about it. After that time one endo said he would do some tests to show me I didn't need it. However it showed I had acquired secondary hypothyroidism as well as primary.
I have been taking NDT for about 12 years now and as far as thyroid is concerned am fine.
• in reply toLilian15
Oh Lilian, the ineptitude is mind boggling!
It's wonderful that you are now well but what a battle you must have had to reclaim your health.
Why is it so difficult to understand????
LOW TSH + INAPPROPRIATELY LOW FT4 = secondary/ central hypothyroidism!!
When my GP perused my strange blood results he immediately admitted that he didn't know how to treat me which was when he sent me to the good Endo chap. At least he admitted that he didn't feel qualified to Monitor my treatment.
The older I get the more cynical I become about the medical profession.
Why become a Doctor?
If you don't want to help or heal? If you aren't curious or determined? If humanity escapes you? Why?
I despair.
X
faith63• in reply to
in the US doctors are very privileged and wealthy..all kinds of perks from the drug company's..trips, money, vacations, conferences and seminars in luxury resorts, meals everything! Fancy cars and Mansions. That's why they become doctors.
i think i may have developed secondary, after having primary. My TSH dose not go above 0.003, on any dose of meds like t4/t3 combo and my pituitary is damaged..squished. I wonder if the thyroid meds damaged it..the t4. I strongly suspect it, based on what occurred and the time frame of the t4/pituitary damage.
My two sisters have been on levothyroxine only for over thirty years so it does not seem to have damaged their pituitary. If taking anything with T3 in it then the TSH will be suppressed. When I got, or started to get, secondary hypothyroidism I was still on levothyroxine.
i got very ill on the levo and my symptoms changed terribly. An mri was ordered and i had damage, that was not there a few years earlier.
That is awful faith. Did they admit it could have been the levothyroxine that did it?
i have been to ill to pursue it. I need to travel to the pituitary center in boston for treatment and diagnosis. I am going to find out more then.. How do you feel? Has your GH been tested? Did you have an MRI?
Since I started with T3 (prescribed by private doctor) and later taking NDT (buying myself), the worst symptoms have gone. No, I did not have an MRI. If GH is growth hormone, no that was not tested either. I had a short synacthen test and a 24 hour urine test. I stopped taking NDT for 5 days and it showed T3 below range, T4 right at the bottom of the range but TSH still very low. My TSH was 8 when I was first diagnosed. From these tests I was told I had primary and secondary hypothyroidism. Endo then proceeded to prescribe T3 as well as the T4. However, the dose was far too small so I had to carry on buying my own natural stuff,
Growth Hormone is one of the first to go with pituitary and my opinion is that you need some imaging and other testing. You need to find out WHY this is happening. With Thyroid running in the family..it can be fixed naturally thru diet. Food sensitivities cause autoimmune disease and thyroid dysfunction..usually grain and dairy.
i really mistrust doctors!
And I've been discharged from my GP and endo for self medicating with warnings that I will die if a stroke etc. The first endo I went to see privately referred me back to my GP with advice that I needed a brain scan and that I had a clear cut case of primary hypothyroidism. She didn't agree - even though my T4 was below range so took a very very long time to refer me. By 6 months later when I get my appointment I was self medicating. When I get my new blood tests with the NHS endo I am told that there is/ was nothing the matter with me.
Is that legal?
I believe so as I have gone off the beaten track. Now I need to pay to monitor it myself. The way I see it is that I didn't have much choice !
That's so very wrong!
I am happy to monitor myself, with how I feel. The NDT is expensive enough!
I am interested to know more about secondary hypothyroidism, mainly what causes is and how is it diagnosed.
I was diagnosed underactive in 1987 when I was 19 having been unwell for over 6 years, I recently did a blood test for hashimotos but it came back negative. I have done a bit of research on secondary hypothyroidism and I remember I sustained a head injury in the school playground when I was about 6 years old, I was unconscious for several minutes then remember waking up in the staff room the next day I was off school with vomiting so possibly had concussion.
From what I understand if the pituitary gland is damaged then it cannot produce TSH which in turn means the thyroid does not produce T4. However when I was eventually diagnosed I had a TSH of 50 (0.5-4.0) which would mean that my pituitary was working fine so hypothyroidism could not have been secondary.
Can anyone clarify if I am correct in this assumption?
• in reply toHelsbells68
Hello helsbells68.
Yes with a TSH of 50 that would definitely mean primary hypothyroidism. When the pituitary/ hypothalamus is under active then the production of TSH is impaired. My own reached the dizzy heights of about 6.2 but both my FT's were way below range.
In some secondary/ central hypo's the production of TSH is virtually none existent.
Reasons for Central hypothyroidism are many - complicated and diverse - hence the reason it now has an umbrella term of 'central' as opposed to secondary or tertiary. It can be difficult to determine whether the source of the problem is pituitary or hypothalamus but the axis is impaired.
My own case appears to be 'Isolated' meaning that no other pituitary hormones are affected - Isolated TSH Deficiency.
HOWEVER the problem may lie further back in the hypothalamus with the production of TRH - Isolated TRH Deficiency.
ALSO
In the past I have been told that I might have 'myxoedema of the pituitary stalk', pituitary hyperplasia, a genetic mutation.......
In others words - nobody really knows!!
It could be all of the above and none of the above!
All they do know is that the blood work confirms a Central problem and the levothyroxine (T4) and liothyronine sodium (T3) treat it.
I've stopped searching/ asking for a definitive diagnosis because I know I will never receive one. The doctors simply can't be 100% accurate in their diagnosis of my condition so they are reluctant to give one.
I suspect this may ring true with many Central hypo's - wanting a definitive diagnosis but not being given one.
Without the time and resources to throw at every patient it's simply impossible to determine each and every cause. .....
X
They didn't and still don't care why and how. They have just said I started with primary and have now got secondary and said they would prescribe T3. Too little too late as I was already self medicating with NDT for 12 years.
What exactly is "secondary" hypothyroidism. I have Hashimotos
strawberrysorbet• in reply to
see my reply to Nanny23 above.
Does anyone know if these results indicate hypo?
My ferritin is 47,
B12 - 411.
TSH - 2.29
Total T4 - 71 REFERENCE 58-161NMOL
FREE THYROXINE (FT4) - 14.3 reference 11.5 - 22.7 pmol
Free T3 - 5.0 Reference 2.8 - 6.5pmol
FT4 : FT3 RATIO - 2.9 REFERENCE 2.0 - 4.5
I'm suffering terribly with hairloss!!
• in reply toAbzieg
My first thought with hairloss and those blood results might be b12 deficient. Look like your T3 is good. Have a look at Dr Chandys b12 support group online.
Hi, I'm new to the group and suspected Central Hypothyroid with low FT4 and FT3 and low TSH but not yet diagnosed as the Endocrinologists and GPs in the NHS seem to be less convinced of the merits of measuring anything beyond TSH. I'd be interested in any NHS Doctors and Endocrinologists that may have an understanding of CH from either a Pituitary or Hypothalamus perspective? There is so little understanding of the role of T3 and conversion issues from T4 to T3 here in the UK? Grateful for any insights you may have. Many thanks.
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Can you go from hyperthyroidism to Hypothyroidism?
