Hi.. I'm still trying to get doctor to believe my thyroid is a problem as they won't accept from private company. So I went and got them done from monitor my health which is NHS blood test and its come back T4 low and even though t3 is OK I'm thinking it's still low. My question is has anyone got there doctor to take notice with blood test from monitor my health.
TIA
Update 19-06-20
Morning.. I am still waiting for the blood test forms to come from my private consultant.
Today received a text from my doctor saying that she has spoken to the endo team and there response was low cortisol levels are unreliable and if significant are asscoiated with weight loss not gain.
TFTS quoted are normal T3-(3.3) & T4-(10.5)
She can check my LH/FSH & Prolactin for Pituary but see can see no previous info suggesting theres a problem.
Shes order additional tests and to collect form from reception.
So problems im having must all be due to Menopause.
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Lillygirl66
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Some members have used MonitorMyHealth and I think some doctors have accepted them and some haven't. If yours doesn't then you should challenge him as to why he wont accept them when they are done by an NHS lab in Exeter.
Your results still suggest Central Hypothyroidism as suggested back January when you posted your Medichecks results. Maybe read through replies in that thread again where both greygoose and I suggested Central Hypothyroidism
Here is some further information that I post when Central Hypothyroidism looks like a possibility:
Central Hypothyroidism is where the problem lies with the hypothalamus or the pituitary rather than a problem with the thyroid gland. With Central Hypothyroidism the TSH can be low, normal or slightly raised, and the FT4 will be low.
TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). In Primary Hypothyroidism the TSH will be high. If there is enough hormone then there's no need for the pituitary to send the message to the thyroid so TSH remains low.
However, with Central Hypothyroidism the signal isn't getting through for whatever reason. It could be due to a problem with the pituitary (Secondary Hypothyroidism) or the hypothalamus (Tertiary Hypothyroidism).
Your GP can look at BMJ Best Practice for information - here is something you can read without needing to be subscribed (you can only read the Summary but make sure you click "Read More" as well:
You could do some more research, print out anything that may help and show your GP.
As Central Hypothyroidism isn't as common as Primary Hypothyroidism it's likely that your GP hasn't come across it before. You may need to be referred to an endocrinologist. If so then please make absolutely sure that it is a thyroid specialist that you see. Most endos are diabetes specialists and know little about the thyroid gland (they like to think they do and very often end up making us much more unwell that we were before seeing them). You can email Dionne at
tukadmin@thyroiduk.org
for the list of thyroid friendly endos. Then ask on the forum for feedback on any that you can get to. Then if your GP refers you, make sure it is to one recommended here. It's no guarantee that they will understand Central Hypothyroidism but it's better than seeing a diabetes specialist. You could also ask on the forum if anyone has been successful in getting a diagnosis of Central Hypothyroidism, possibly in your area which you'll have to mention of course.
Thanks for your response I do feel its central Hypothyroidism. Because I'm menopause age I came away from doctors with HRT but I don't feel any better. I'm going to gather and read as much as I can. My doctor does read bmj so I need to push him into that direction and stand my ground.
Did you discuss Central Hypo with your GP? Did you tell her you want to see an endo? If you're waiting for her to make the first move, you'll wait forever, because she won't. She just doesn't have the knowledge to see there's a problem with your thyroid. You have to point it out to her and tell her why.
And, it's not just a problem with getting her to accept private labs. The problem is, she doesn't know what she's looking at. You said in your last post that she said she didn't know why your FT4 was so low. So, we told you why it was so low. Did you pass that information on? Or is this a different doctor?
And, your FT3 is not ok, in any sense of the word. It is far too low. A euthyroid FT3 would be up nearer mid-range. So, it's really not surprising you don't feel well.
Morning I did a e consult online and doctor just called and said my TSH is fine so they wouldn't treat anything else and my T4 and T3 can fluctuate that it's normal.and if I'm worried about my weight they would refer me to a dietician.
I asked the doctor if I can see a specialist she said I could see a private endo and they would get reception to phone me. And weight issues are menopause.
This is why I don't talk to doctor because they make you feel like an idiot and poo what you say and make you feel like your the idiot. I said I know for a fact something is wrong.
What is the point of doing any bloods if you just get ignored.
All my cholesterol levels are abnormal and my uric acid is high I've changed my diet to a healthy one.
I said to my husband this morning they will fob me off. TSH label is a curse
Well, yes, we all know that their line of defence is too make the patient feel small and stupid. It happens all the time. That is why you have to do your research so that you know what you're talking about and don't allow them to fob you off like that.
Of course your TSH is fine. The whole point is that your FT4/3 aren't fine at all, they are too low. And, yes, they do fluctuate slightly, but not nearly as much as the TSH! This is the sort of thing you have to know so that you can shoot right back at them and not let them get away with their BS.
Your cholesterol levels are abnormal because your FT3 is abnormally low. There is a direct link. That's another thing you have to know because they don't. And, cholesterol levels have nothing to do with your diet.
So, by the sound of it, you didn't mention Central Hypo. Did you even do your research on it? And, of course they are going to come out with the old baloney about taking thyroid hormone replacement could do you more harm than good. What they are counting is that you know less than them and will believe all this rubbish. You have to know more than them - which, quite frankly, is not that difficult. You have to be your own advocate with thyroid. It rarely gets handed to you on a plate. Especially not with something as infrequent as Central Hypo.
Thank you.. yes i did mention Central on the e consult & this morning when they called me she said my TSH is fine I said but my t3 & t4 arent and thats the issue she said they wont check me because my TSH is fine again. i mentioned Cholesterol and i think its connected. My cholestrol has always been fine My good cholestrol is fine but others not?
I listed all my symptoms she said menopause is most probably my problem.
My T4 has been the same the last year or so my TSH is changing and t3 is getting lower everytime i have had a test.
Why do the doctors ignore private blood tests when they are unwilling to do them! your showing your trying to advocate your own health and its still not acceptable to want to give you the care you think you will receive
Thanks Greygoose i will search & search as much as i can to get to the point i need to be at.
But, what did she say about Central Hypo? All she knows about is TSH. She hasn't learnt anything about FT4 and FT3 in med school, so she will just ignore those. That's why she needs it spelt out to her about the TSH not corresponding to the other two readings. She doesn't know any of this, as much as she pretends she does, so she has to be told in words of one syllable.
There's no such thing as good and bad cholesterol. That's just marketing guff to scare people into taking statins, invented by Big Pharma. When they test your cholesterol, it's not even the actual cholesterol they test. They test the protein carriers of cholesterol. And, they have decided, for not good reason, that one type of carrier is 'good' and another type is 'bad', but it's all rubbish. Your level is high because your FT3 is low, so the body cannot process cholesterol correctly, and it mounts up in the blood. It is, in fact, proof positive that your FT3 is too low.
You have to understand that if there's one thing a doctor hates, it's diagnosing and treating thyroid. They will make any excuse not to do it. That is why they insist the TSH has to be over 10 (in the UK, anyway) before they will diagnose, it cuts down on the number of people diagnosed. Quite why I don't really know. Maybe because they realise they're out of their depth with thyroid, they know nothing about it. Maybe because it costs them money, what with free prescriptions and everything. Which is why they prefer to prescribe anti-depressants and statins, because they financial incentives to do so. You have to understand that medicine is not about patient welfare, it's about money. It's a business, like any other.
But, at least she said she would refer you to a private endo. So, that's progress of sorts. But, you do have to chose your endo carefully. Not many of them know anything about thyroid. Ask on here for recommendations for a good endo who knows about Central Hypo.
its not actually the fact that the tests are private, its that they dont know what you re talking about. My Dr says things like 'yes, we dont do that'.
it makes it very hard to have an adult to adult conversation (especially if your brain doesnt work), and so the feeling of being belittled
I'm in exactly the same situation as you..ive had 5 tests 3 private 2 nhs all show central hypo as confirmed by the knowledgeable ladies on here my doctor refuses to refer me to an endo and apparentky sent my results to one who said because only my t3 and ft4 was below range but not my tsh he couldn't see me having secondary hypo...this has been going on over 6 years and I'm in perimenopause too so the symptoms overlap. I'm buried my head in the sand and I'm as poorly as ever but can't find a private endo with good knowledge of secondary hypo not that isn't near London and I'm in north England. sorry I'm not much help because I'm putting my health on the back burner as usual but you shouldn't
Thank you and sorry that your going through all of this I know how frustrating it is.. I'm not going to hold my breath that I get the outcome I want..my blood test this time I did through monitor my health which is done in a NHS and I complained to my doctor to say explain to me why you wouldn't take notice of them.
There also cheaper than medichecks and thriva that's why I'm pushing more.
I used medichecks and they just ignore them ..but their own tests showed the same plus all the symptoms and high cholestrol history of 5 family members with it too....i would pay private but the reviews are mixed and not good with regard to hypopituarism because it's not that common. I am considering hrt but like I've read I think it could make things much worse..will you keep me updated if that's ok thank you
Hi.. Had the call from private endocrinologist and he listened to everything I said and I gave all my symptoms he wants me to have full profile of blood tests he didn't have any of my copies of private bloods just results from doctor so he wants to start from seeing what all my bloods show and work from that. I felt happy to go forward with starting from having bloods redone.
that sounds positive did he say anything about your symptoms pointing to secondary? and have you seen this endo privately or referred by the nhs? they refused to refer me
My doctor didn't want me to go private so I couldn't believe that the next day I was called that private doctor could do a phone consultation the next day and I thought go for it. So she did refer me the endo had all my results but only results from December. Because I have so many symptoms he said they could overlap other things. He's sending out blood test form and so he wants to make that the starting point. He said its basically a trawling situation and hopefully we can find out what's going on. I also got a list of private endos from this site someone sent me and it came through within a hour.
I haven't heard back from my doctor yet don't know if they know I've gone down private route yet.
I will keep you updated on the outcome from this if you want.
£200 I know it's expensive but I was on the phone over half an hour I know I'm paying for him to listen he asked all about my family any illnesses. I was supposed to be going to miami last weekend obviously cancelled and I wanted to be well and fitter to enjoy the experience as I'm not great in the heat with this extra weight. So holiday rebooked for next June so I have a year to focus on my health and that's why I decided to pay private.
He said to me.. right start from beginning tell me everything you want me to know symptoms everything then he asked me questions and then he said the way going forward from today is full bloods.
Thank you...I'd have to write down all my symptoms or I'd forget.. but theyall sound like menopause so I'd have to rely on my blood tests for confirmation.. my only worry with going private is that a scan of the pituitary is needed and I dread to think what that would cost...I'lllook forward to seeing how you get on.
If you can, make sure you take a copy of the blood tests mentioned on the form. A scan would be ideal as long as it is easily readable, but just writing down the listed tests would be better than nothing.
I would investigate all the tests asked for and see if they are the ones you expected to get done. You also need to ask for a copy of your results and reference ranges after the tests have been done so you know if the lab actually did the ones the doctor asked for.
A useful website for looking up test results and what they mean is this one :
Hi greygoose I have emailed my doctor tonight to say that I know I mentioned Central hypothyroidism in my econsult but I also added all my symptoms that I'm struggling with everyday so that in itself should be something to chat about not to go straight into TSHis OK and I won't get tested with anything else so I'm fine. I said that I wasn't asking for tests because I had the results of the test and I was recommended to have a chat with them about it which the doctor wasn't really interested in doing that. I asked her to explain why my NHS BLOODS were not being taken into consideration just because they weren't done at my surgery and why another NHS site would be any different and why was she not interested in what I had to say about Central hypothyroidism and talk it through and why I had come to that conclusion.
I'm fed up with everything being put down to menopause. I also attached the nice guidelines from 2020. That TSH should not be the only test done when patient is showing thyroid systems then more tests need to be done.
And tbh I know I said about private but I would prefer if they just gave me the care I'm asking for but if I have to then I will but I think it's unfair.
Thanks for the guidance and the nudges off everyone to be my own advocate much appreciated.
Well, if it wasn't menopause, it would be something else - anything rather than admit you might have a thyroid problem.
As for symptoms, they tend to regard every symptoms as a separate disease, and treat it accordingly - that is if they don't accuse you of imaging your symptoms.
But, you could try the following line with your GP: which scenario is the most likely: a) that you have thirty diseases with one symptom each, or b) you have one disease with thirty symptoms. Adjust numbers to suit your case. It might have some impact.
Lillygirl66, last Jan after I gained 20kgs and got Shingles the GP gave me HRT. GP told me with a patronising smile that I was in good health though I had high cholesterol and I felt ill and Insomnia and loose stools for years.
The next week I got Shingles again much worse and insisted on more tests. It was found my Thyroid went ‘subclinical’ and I was put on 25mcg which made me really ill and my toenails dropped off. Then Thyroid got worse and I was told was Hypo. If I could turn the clock back I think the Eostrogen affected my Thyroid which was probably dying anyway but I also had several vitamin deficiencies including severe Zinc deficiency which doesnt help the Thyroid.
I’m meant to be tested for Pitruitary problems which I wouldnt be surprised as lost a lot of blood having babies as have blood clotting disorder.
Knowing what I know now I would check all your vitamin levels and be wary of the Oestrogen.
I have virtually lost all the gained weight, sleep throughout the night and normal once a day bowel movement so shame on the GP’s that tell you to calorie count! It has nothing to do with it and dieting is probably worsening vitamin levels x
Thank you MichelleHarris I told the doctor today I know its more than menopause! Last year i went to doctors because i couldnt lose weight but i actually felt like i was at deaths door and i said to my doctor that I was having diarrhia up to 7 times a day while on the slimming world diet i was concerned that i wasnt getting any nutrients i just felt empty inside they kept saying its my age its not thyroid because my TSH was normal & i was saying my CRP is high yeah but thats fine they said so i said about nutrients doctor said the body holds the nutrients i need and gets rid of what i dont need.
Anyway kept going back to doctors and they wouldnt test me for anything else so went to medichecks & Iron Low, vitamin d -20
and b12 was 58 and t4 was low then.
I dont feel well i feel like a hypochondriac i feel they make me feel stupid and what do i know there the doctor not me.
My weight is going up i feel completely out of control of my body i want to scream with the whole nonsense of it.
If they arent willing to test my t4 or t3 then they should accept private or at least put us in the direction of starting to feel better.
You definitely aren't a hypochondriac. Those nutrient levels are awful. And so are your Free T4 and Free T3. It's no wonder you feel so ill.
If you could post your nutrient levels and the reference ranges people can suggest how you can improve them. It may reduce some of your symptoms and make them slightly more bearable - but you aren't going to get well until both nutrients and thyroid are treated appropriately.
Welcome to the club when you have to deal with doctors who don't have a clue. Your problem here could be a combination of adrenal and thyroid issues like me. Problem is one drives the other. You end up trying to fix yourself because doctors don't recognise the problem and are only willing to dish out beta blockers and antidepressants for the symptoms. It is most likely central hypothyroidism because your pituitary is putting on the brakes because your adrenals are not up to it. When your adrenals can't handle things your thyroid goes low as a safety measure. It can also go the other way when your thyroid is low it puts too much stress on your adrenals and your body then slows metabolism and you gain weight. This is the wonderful thing about the body unlike doctors it's not stupid and will always rebalance to bring back hemostasis. That is why medication given by doctors throws the body into chaos and the body goes haywire to balance it's self. So what came first bad thyroid or bad adrenals? You need to check ferritin, CRP, folate, b12, vitamin D. Are you eating enough protein? You need that to drive your TSH. Get a saliva cortisol and dhea done. That will check adrenal function. High CRP can indicate low adrenals and inflammation. It's a case of putting the puzzle together this is where a GP is useless and why there are so many sick people out there. Folks on here can help you but thing is we are all here with thyroid problems for different reasons. It's figuring out why you as an individual have a problem. With results like yours if start with the adrenals.
CRP is high abnormal 12.99 ( range 5) and has been abnormal for the last year or so, but not major high my doctor said. They said it would need to be in the 100s for them to investigate more.
Folate is normal @ 5.46 ( range 3.89)
B12 was 58 last year so have been on injections since september
Vitamin D was 20 was on 800ui then moved onto 3800ui and im now at 66 so normal
Uric acid is a bit high as well doctor said said dont know about that?
IAll my cholestral are abnormal accept the good cholestral is normal.
Ive been doing slimming world and can not lose weight and just feel awful.
CRP ponts to inflammation due to low adrenal function. Docs will ignore it. Your folate is not normal should be at least double figures. If your b12 was that low you should have been tested for pernisious anemia? Pernisious anemia is autoimmune and if you had it hashimotos is also likely so ask to be tested for both. If you have high uric acid your pH is off? Sugar can cause it or bicarbonate of soda and water can bring it down. Your vitamin D is still too low needs to be 80-100. If you can't loose weight it is an adrenal/ thyroid issue. I think your doc requires a kick up the bum!
Sorry to jump in but I just wanted to say I'm so sorry you're experiencing all this Lillygirl. It sounds just like me. I've finally left my GP practice after they basically told me it was all in my mind.. Private endocrinologist showed me it most definitely is not.
But magsyh you sound just like me. My thyroid is playing up but I also have adrenal fatigue. I've suspected my pituitary but endo didn't seem to look in that direction. Having read the info on here I'm wondering if he's not that clued up on thyroid. He's seems more of a PCOS specialist, which apparently I also have, insulin resistant type.
Magsyh you said you have both adrenal and thyroid issues. How have you solved them? Any advice really appreciated.
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