Central hypothyroidism again: I am really... - Thyroid UK

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Central hypothyroidism again

I am really struggling for breath today, and feeling awful.

Battle with gp means no help there.

Gp has no idea about CeH and shouted at me because private endo prescribed Levo and my tsh is suppressed (it was ‘suppressed’ anyway because I can’t make it so low t3 and t4)

He withdrew the Levo-trying to make what I have last.

Nhs endos diagnosed subclinical hyper, and I can’t make him believe they’re wrong. I feel as if I’m dying.

I just wondered if anyone else in the same or similar boat- I feel so ill and hopeless.

Ginny

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I wonder why your GP thinks he knows more than the private endo, who obviously has a special interest in thyroid? I imagine GP has a god complex and his poor ego has been bruised by being trumped by the endo.

Are you still seeing the private endo? Can you still get your Levo prescribed by him? You can buy Levo online :)

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Thank you so much- just feeling so ghastly I really need a friendly voice.

Gp freely admits he doesn’t know anything about CeH, but he completely buys into the nhs endos diagnosis (even though the private one is a very famous one and a former president of the BTA!), and says he is a greedy private monster and deliberately mistreating me for gain because he has no ongoing responsibility for my wellbeing and doesn’t care!

He can’t accept tha the nhs ones are just wrong- and have refused to do the tests that would be needed on cost grounds. X

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So he's questioning Dr T's expertise then. Interesting, considering he's a leading endocrinologist and was working within the NHS until his retirement, I believe he now only sees private patients (not sure how long he will do that if he's of retirement age).

NHS endo is probably a diabetes specialist, can you look him up on the hospital website.

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Not Dr T- he’s in Edinburgh but Dr V, who’s in London. Dr T is wonderful- I don’t think this would happen in Scotland. I don’t think he will retire, I think he’ll be a Dr P, he knows his patients need him. Dr V is much younger, and used to do nhs practice at the Royal Free, but now only works privately. As for the nhs one-

I did and he is, all his academic stuff is abou grhelin metabolism, so definitely has his heart in diabetes land.

My gp is maddened by patients getting privately prescribed stuff and him having to write prescriptions for it (and tests), and is just not able to believe that the nhs is so underfunded it’s letting people down xxx

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Dr T told me that there is not a endocrinologist or doctor who will treat anyone with a normal tsh and that if you have a normal TSH any apparent hypothyroid symptoms are due to something other than thyroid disease.

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Oh no! Was that recently? X

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It was about a year ago. I was very cross for a while. I think he is good re prescribing T3 but not great re recognising rarer forms of thyroid problems. He is a funny man and has been very inconsistent over the years. He used to be very anti T3 and although he comments about current guidelines not being fit for purpose these days he did little to improve matters when he was head of BTA.

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Dr T? X

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Yes that's him. They have an article written by him, the pulse article that he wrote when he was head of the BTA that is available via here some how. It is a useful article as it recommends high doses of T4 but he clearly states that T4 is the only treatment necessary and that any symptoms remaining after a high dose of t4 are probably psychological or something like that. He is a funny man. He is saying all the right stuff now because prescribing T3 must be his bread and butter, he want to be friends with us all now but things were not the same when he was head of the BTA and working in the NHS. He changes with the wind and has said some awful stuff in the past about the likes of Dr P and D Skinner being charletans. I suppose we need to be greatfull that he is saying more of the right stuff now but he was a year ago still very ridged about TSH.

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How disappointing- and you had to go all the way to Edinburgh? X

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No I emailed him to enquire listing my childs symptoms and blood results and asked if he could help. He said that he couldn't as my childs TSH was normal and that nobodys else would either and that I had to consider something other than thyroid disease. Thankfully I didn't pay for that opinion.

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Ah, now I understand!

Xx

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If he had met Dr P he would know better x

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I saw him last summer- he wanted an mri and I couldn’t afford the bupa one, but I’ve found one I can afford and I’m going next Monday. Apparently the pituitary damage doesn’t always show but hoping so rather desperately. When I get the result I will see him again, and ask him for a referral to another private one who has an nhs practice that he is willing to take me into- and he will do all these tests I can’t afford, at least I’m hoping so. I’m also thinking about making a formal complaint against the nhs ones for having my gp withdraw needed medication without adequate testing, by not explaining to him why I need it.

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It really is appalling the lengths we have to go to sometimes. We pay for the NHS, it should be there to investigate and look for the cause, we shouldn't have to be paying again because they're not doing their job properly. I hope you get your answers, please update us when you have some news.

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I will the moment I have something to tell- I came across a site called I Have Sheehans Syndrome which has so many women, quite a few in the UK, and nearly ALL desperate to get CeH diagnosed!

I’m lucky I have dexamphetamine for adhd, and they help a bit as a bronchodilator, so I took a couple (I can’t use my inhaler because it dries everything up too much without enough levo) but gp problem is the last thing I need- he is in denial about the destruction of a service he’s given his life to. The stuff he was saying about Dr V was actually mad, and now I feel I can’t really go back to him xxxxx

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Could you Pm me about DR V I have considered seeing him. I will look up this sheehans syndrome too.

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Right away x

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I hate how nhs endos don’t care at all how ill you are xx

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That was certainly my experience! He was TSH obsessed, insisted my Levo was reduced to a level where it increased from suppressed to within range. He managed to get it to scrape into range at 0.4 (0.27-4.2) but that made my frees plummet and I ended up with FT3 at 2.8 (2.8-7.1).

I was extremely unwell, had to give up working in my own business and be looked after for 2 years. Fortunately my GP agreed when I said I wouldn't be going back to see him and raised my Levo again but the damage was done. That was back in 2002 and the NHS never managed to put right the damage they'd done. I have had to do my own investigations and now add self sourced T3 to prescribed Levo (which new GP doesn't know about and would totally freak out if she did) but I do private blood tests and monitor myself.

Ignorance is rife in thyroid care and patient wellbeing is not considered!

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My untreated tsh is never higher than .1 which is why I get all this hyper stuff except that my ft4 can’t be got over 10 without levo. They are tsh mad and it blinds them to everything else. I found an interesting thing last week-the European Thyroid Association guidelines (2018) describe central hypo in people with Ft4 in the lowest quintile and sub-rage tsh. I’ll try to do a link x

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Whttps://www.karger.com/Article/Pdf/491388

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Oh hell, not a link. But worth looking up...

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Ok, my link is above. For those trying to get central hypo diagnosed, Sheehans or otherwise, I thought this was very useful x

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I can understand the NHS in away not sending people for loads of investigations that are very costly and often turn out to be red herrings but what makes me mad is that you do not get refunded if your private investigation shows up something the NHS should have found and treated. I have asked my GP a couple of times about this. Will you refund me I am a right and you are wrong about this? but he has just apologised and said not able.

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I think you’d have to make a formal complaint.

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I've found the NHS send you for lots of investigations often not really related to the symptoms you are having until something comes back normal and they can heave a sigh of relief and not treat you. Must cost a fortune. I had a referral to a gastro for low ferritin even though I told them I was vegan - plus barium swallow, colonoscopy, bile acid and SIBO tests. Treatment after all that: ferrous fumarate prescribed by consultant not GP! Wonder what the total cost was? OK. I'm glad I don't have internal bleeding but really ...

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The investigations and treatment I have had re by low thyroid untreated beggers belief. Psychiatrists, fertility investiagtions and treatment, gyne, investiagtions, sex therepy, obesity clinics, endoscopys, memory clinics, MRI and cat scans, migraine pills, constipation medication, fasting blood sugars, anti depressants, proton pumps inhibiters, pain killers, chronic fatigue services, all sorts of treatment for acne and dry scalp, sleep apnea studys, urology.

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Yep agree- I once went to 5 different fields of consultants in one week with my symptoms.

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Looking at your first post a year ago: -

TSH 0.1 mU/l

fT4 12 pmol/l

fT3 4.5 pmol/l

Don't have the reference intervals but the fT4 looks low and fT3 below average with a very low TSH. This suggests the problem is too little TSH from the pituitary and not too much thyroid hormone. Not really central hypothyroidism which is much more severe but a pituitary that is underperforming, at least in terms of TSH.

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It came after a massive obstetric haemorrhage, so I think Sheehans Syndrome. I haven’t had dynamic testing which is needed to demonstrate this but growth hormone deficiency often comes next and adds to the feeling lousy- also cortisol, which I think I do have a problem with x

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I haven’t had an untreated ft4 for ages but it went down to 10.5. Their interval is 9-22

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That’s where I’m coming from xxx

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I haven’t tried it yet- I’m still fighting my diagnosis war, but I will soon, because I have some problems with Levo. I found the guidelines- thanks!

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Dear Jim-My ft3 went down to 3.5 too I think- that must be quite low if your homeostatic system will throw every thing under the bus to maintain it? Thank you!

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Shouting at patients is horrible

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I’m just going to try to find the NICE guidelines- I don’t know if it’s just me, but when I’ve tried before their website has been as clear as mud!

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At present, there are no NICE guidelines.

There are some Clinical Knowledge Summaries but those are not NICE guidelines and do not have the visibility and status of formal guidelines.

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That’s interesting. I found and saved the ones reallyfedup suggested, and they are most illuminating!

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I don't know if this link will work or not...

nice.org.uk

Go to the link above and type in hypothyroidism. None of the listed guidelines is for Hypothyroidism - just other topics which must mention hypothyroidism.

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I did find the ones reallyfedup linked on tpauk, but I am so bad at linkage, and only have an iPad, that I can’t show them. They were helpful though x

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God, this is awful!

I stopped medication after a row with the gp but was so ill I had to restart. I don’t have any recent results worth showing because medication is all over the place. I haven’t tried NDT yet, but I will. Xxx thanks!

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Hi there not sure what CeH means but will throw in my experience - I know who you mean by Dr V - someone I had a stand up row with at the NHS Hospital he worked at - I was absolutely sobbing hysterically all the nurses and Drs came out of their offices so embarrassing when I look back - but to be told it was all in your mind yet again just did it for me and once again another visit to another endo somewhere else - I drifted from hospital to hospital - practically almost all of the London Hospitals and local. All I was told was that my thyroid was fine - my blood tests showed 12 - range at bottom was 10 yet I had Myxedema - had put on weight within months from 8.5 stones to 16 stones couldn't breath - over 100 serious often life threatening symptoms to contend with. About 15 years ago the Dr T you mention in Edinburgh made a derogatory comment that resulted in me writing to him at his NHS hospital in Scotland - it wasn't long after that he seemed to change his tune - mind you I did mention that one day like the tobacco industry it would be proven that Drs knew what was going on with thyroid diagnosis but it was being kept under wraps just like nicotine was a killer but they did nothing about it. However going back to the way you are feeling - I was determined to get T3 as I felt so ill on Levo tablets - when eventually I got my NDT I was over the moon - but boy did I feel ill. Down the line I now know they were almost right - I didn't need T3 - I suffered for over 2 years thinking the sweating was not enough thyroid hormone - not enough adrenal support - my breathing and the pressure in my chest was awful - you name it I tried to adjust the symptoms - eventually going to see a different endo who said I think you are over medicated - I thought here we ago again - then she said - I hope you aren't damaging your heart - co-incidentally I had to come off NDT for a short senacten adrenal test and my goodness did I feel better - what I have since found out is that the symptoms for under active thyroid - loss of hair - sweating or overheating -tiredness - breathlessness etc. are exactly the same for over medication which makes it so confusing as to what is going on. Eventually as I have mentioned before my issues which are not the same as for others I know but worth posting is that I have since found out that my issues were all adrenal and other hormones that contributed to the thyroid gland going into underactive mode - it took me 25 years to drill down to this theory and I am now getting people to listen to me - so all I am saying by posting this information is don't always think that it is all about thyroid hormone per se - I truly believe some of the people who have trouble have another issue going on - either low DHEA or Progesterone or other hormones that are affecting the thyroid via another pathway - I don't know the answer to this problem - until they start testing for these hormones we are only able to tread water - I asked a Professor Endo recently- do you test and treat progesterone issues and he said NO - that is a gyney issue - mind you he looked up pregnenalone after saying I don't know what that is and said let me look it up on Dr Google whilst I was in the room and sent a letter to my GP saying - I am more than happy for her to stay on pregnenalone - in other words let her stay on anything as long as she feels better because we haven't got a clue what is going on. How does a Professor in Endo not know about the sex hormones produced by the adrenal gland that can compromise the thyroid. Preg is the master steroid hormone in the body not cortisol.

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I’ve been taking pregnenolone for a month or so and I do think it’s helping- I’ve got some liquid in a dropper bottle.

I should say again that I’m only involved with Dr V because my problem is a Pituitary one which he has written on, and he’s helped a lot, but he looks quite fierce!

My thyroid is fine , but I can’t make tsh in sufficient quantities, so I need thyroxine, but probably some other things too-i found the separation between thyroid/ diabetes and gynaecological endocrinology weird and unhealthful too.

Dr T is from my native city, so far away and retired, but I have found him to be a very kind and open minded person- have you read his Counterblaste article? At least he likes his patients and wants them to feel well, which is far from evident, in all cases!

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CeH is just a grand term I came across the other day for central (hypothalamic and pituitary) hypothyroidism x

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