This is a bit involved, but if anyone can manage to tough it out, I would be very grateful for comments and advice.
I owe my diagnosis to human bean, without whom I would probably have been as ill as I was when I first approached this forum four years ago. I was diagnosed by the nhs teaching hospital my go sent me to as having subclinical hyperthyroidism, and without human bean to point out that low tsh and t3 and t4 at bottom of range pointed instead to central hypothyroidism, I would have been stuffed. HB suggested Sheehan’s Syndrome, and I had indeed had a massive obstetric haemorrhage. I won’t go through all the steps in between, but after being rubbished by two nhs teaching hospitals altogether I was recommended to the nhs endo I see now- he saw me at his private practice first and then took me into his nhs practice. My nhs GP however refuses to issue prescriptions for the levothyroxine he prescribes for me. I still have to pay him privately to prescribe for me and I’m finding it very hard. A further problem has just emerged- I had an nhs endo consultation by phone (COVID), with another endo in his department (he is a leading consultant), and I completely failed to get any of my points across. She wrote to my GP surgery although I’d tried to explain that they won’t prescribe for me. The worst part though was that she ordered a blood test for me with the following result:
TSH <0.01 (0.27-4.2mlU/L)
T4 20.8 (10-23 pmol/L)
T3 7.5 (3.1-6.8 pmol/L)
I didn’t know this was even possible on T4 alone!
I was in hospital last November and they kindly did a T3 test for me although no T4, and the result was FT3 4 pmol/L (2.5-5.7 pmol/L). On both draws I was taking 75 mcgs of levothyroxine.
She has recommended reducing T4 and I am very unhappy with this. I am still miserably tired, cold, and my hair is half gone. Surely their results aren’t possible without extra T3?
Pearce CJ and Hemsworth RL BMJ 1984 888 693-95 Total and Free Thyroid Hormone etc., summarised by Dr Toft in his Counterblast thus:
‘It was difficult to increase T3 into the hyperthyroid range with LT4 unless serum free T4 concentrations were markedly elevated at around 35-40 pmol/L
How accurate are these tests? And what can I do about the whole mess?
With very many thanks to anyone who can bear to plod through this,
Ginny52 x
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Ginny52
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With regards to your previous treatment I am sorry to hear you that your GP is so ignorant in the varying causes of hypothyroidism. It is a disgrace you are having to pay for thyroxine.
With regards to these latest results it is possible there has been an assay interference but I am not particularly knowledgable on these except for the usual biotin, but have read about macro-TSH that I believe can also happen to T4 & T3.
Do you feel over replaced? ie hot, flustered, pounding heart, etc?
For better comments if you either change your title or post another that is titled something like "Possible T3 Assay Interference?" others more knowledgeable might comment.
Tsh is always suppressed in replaced central hypothyroidism, and my endo was keen to raise T4 to the upper end of the range. But how can t3 exceed T4?The dose was 75mcg on both draws.
Because you may be slightly over replaced and a very good converter, but some other factor is at play that is preventing thyroid hormones from working on a cellular level.
Testing after 2 days will definitely have skewed results.
Agree you need antibodies testing which was my next question 😁 before HU duplicated my replies, threw me out, wouldn’t allow me to delete/report!! 🤷♀️ .... Anyway, having read all the above/below now, the way I see it is you have two issues;
- an expensive endos TFT’s that pose an improbable result that requires retesting because you can’t dose on those results (no matter whether meds come from costly endo or free GP.)
- A need to be treated for central hypothyroidism by your GP.
If this were me I would forget the Jostel calculator & expensive endo, approach GP, explain you think you were originally misdiagnosed as having hyperthyroidism because thyroid hormones have NEVER been elevated and symptoms match those of hypothyroidism.
Offer your paper but accompany it with a copy of the NICE guidelines (link below) highlighting the parts that state ‘Secondary hypothyroidism is a condition where TSH levels are inappropriately low or normal (or rarely raised), but FT4 is below the normal reference range’ and ‘Secondary hypothyroidism is caused by a pituitary or hypothalamic disorder.’
…. ‘My t3 and t4 are at the bottom of the range, without treatment, and my tsh 0.1’ … Ensure he looks back at the results you were originally diagnosed by and considers that any results since medicating are skewed by meds, ie can not now be used for diagnosis purpose but for only dosing replacement of those low thyroid hormones.
Ask for TFT’s that include TSH, FT4, FT3 , TPOAb, TGAb, TRAb’s. These are essential for enough info that allows a more comprehensive picture to your thyroid function. If your GP is uncooperative use private labs (link below) as other members have to and post results for comments. This need is morally wrong but is cheaper than paying for an endo you can’t afford and isn’t even achieving what you are hoping for.
Stop any biotin supplements a week before, stop thyroxin 24 hours before, don’t eat before test and ensure test is no later than 9am. Also having tests done in a different lab will hopefully reduce the risk of more possible assay interference.
If & when it is established that hyperthyroidism is out, be prepared for a firm stance. We have had members with central hypo who have suffered ongoing battles to get meds because doctors mistakenly still dose by TSH alone. You may have to politely remind your GP that whether its the hypothalamus or pituitary at fault the treatment is the same and that is to replace the low thyroid hormones and ignore the low TSH.
If GP still refuses to prescribe thyroxine, you could start the whole roundabout again by asking for possible hypopituitarism to be investigated or do what many of us have done and that’s buy our own replacement meds and dose ourselves with the help of the forum.
If you put ‘central hypothyroidism’ or ’secondary hypothyroidism’ into the search bar up top you will get lots of hits from others who have posted re this problem.
I wish relations with my gp were that cordial!We have, unfortunately, already been there. Both endo departments he referred me to diagnosed subclinical hyperthyroidism, and that, as far as he is concerned is that. He’s now abusive. I could find another twenty nhs endocrinologists to agree with me and it would just be more abuse.
I am theoretically supposed to be an nhs patient of the endo I’m now with, it just doesn’t work out that way because the gp isn’t prepared to issue prescriptions. My last nhs appointment was a telephone one with another endo in his department, and the phone line was terrible- she didn’t seem to understand that although I’m an nhs patient, I’m not getting prescription levothyroxine.
So although this is expensive, there isn’t any way I can do it for less. To get levothyroxine for the pharmacist’s price, about £5, I need a prescription, and to get a prescription I have to pay the endo to speak to me (phone appointment) in his private practice (£100). Anything else is more expensive. I know this isn’t right, but I can’t see anything else I can do.
Long-shot, here: have you ever had your antibodies tested? It is possible to have Hashi's and Central Hypo at the same time.
But, you didn't answer radd 's question - which is the same one I was going to ask: how long a gap did you leave between your last dose of levo and the blood draw?
Oh. That's not the answer I was expecting. It should have been just 24 hours. So, had you just left 24 hours, your FT4 might have been higher. I think you need a retest. Something weird is going on.
Yes! Since the endo I spoke to (not my usual one) seems not to have taken on board my problem at the GP’s, I have to pay to speak to my usual one and have him prescribe for me anyway 🙁
I should think he’ll allow me another test. But I’ve never seen a paired t3/t4 result like that, when the person wasn’t taking liothyronine. I’d left it an extra day because I was hoping he’d raise it, so it was an unpleasant surprise- the t3 test I had in November felt about right.
Yes, as I said, there's something we don't know, there. It's not normal at all. Especially not on only 75 mcg levo! Which is a tiny dose. It's just a pity that doctors don't know enough about it all to realise that there's something on going on.
Also, I’m really not feeling well. All the clinical hypo sign (the ones endos ignore!) seem to be back- my hands and feet are freezing, I can’t stay awake, and I have awful constipation etc. I feel very weak and shaky.
Sounds more like you're under-medicated than over-medicated! In your November test, your FT3 wasn't even mid-range, and it's low T3 that causes symptoms. And, if you lower your levo dose, your FT3 will also reduce. I just can't understand why they don't see that there was something wrong with your last test, and that your FT3 cannot possibly be that high, now, and that you didn't need your levo reduced. Are you able to put your dose back up by yourself?
That sounds very much more consistent with how I feel!
I won’t have any levothyroxine at all unless I speak to my endo privately, and he may believe me and do another test. I just don’t think you can get results like that without taking extraneous t3, which I wasn’t. I did read the article Dr Toft cited, which I mentioned in my original post, and you wouldn’t get this (in-range T4 and over-range t3) with levothyroxine alone. He has never made me feel silly yet, so there’s some hope. My nhs treatment has never got off the ground so I have to pay anyway, both for the consultation and for the levothyroxine, which is hard- I can’t afford it but there it is.
No, I don't need to read the Dr Toft article. I know that FT3 just isn't realistic - even if it were possible that that could happen, the fact that your FT3 was so low on your last test, whilst taking the same dose, tells me there's something wrong with that result. It just can't happen - not outside Hashi's, anyway. And, that's why it makes me screaming mad that your doctors don't understand that. It's just common sense, when you think about it. So much for a med school education!
Do you have to go through a private consultant - or any type of consultant at all? You obviously now know more about your condition than any doctor you've seen, so why not self-treat and buy your own on-line? It would be a lot cheaper!
I was hoping that he would be able to help me look for other pituitary deficiencies- the tests are ruinous! He has done, and it looks as though it’s only tsh deficiency.I do want to ask (a pituitarist who really knows his stuff- they vary so much!)- is there actually no way of distinguishing between tsh deficiency from pituitary failure and suppression of tsh by hyperthyroidism? I feel it leaves me very vulnerable to the whims of GPs etc, who just don’t know very much. Also my medical notes now make me look like a crackpot!!
My t3 and t4 are at the bottom of the range, without treatment, and my tsh 0.1. This was identified by two lots of nhs endocrinologists as ‘subclinical hyperthyroidism ‘, a condition with no symptoms when I was very ill indeed. I suppose it’s a matter of what your own norm would have been- I have no idea since I never had it tested before I got ill.By pituitarist I suppose I just mean an endo who is even aware of the existence of the wretched thing.
The only unequivocal measurement I’ve found that shows a quantifiable difference is the piece of algebra called Jostel’s equation. I don’t know how widely accepted this is. Other than that it’s just clinical symptoms (about which most of them really seem to care sod all) x
Identifying results like that as 'subclinical' hyperthyroidism just goes to show how little they know about thyroid in general, and the TSH in particular. Were these endos thyroid specialists? Or diabetes hacks?
I googled Jostel’s equation, but it's way beyond my mathmatical skills - which are semi-non-existant! But, common sense tells you that The TSH level follows the levels of the Frees, in inverse proportion, it does not lead them. If the TSH doesn't follow the Frees, then there is a problem with the pituitary.
But it's true, as Central Hypo is deemed to be very rare, an awful lot of doctors have never even heard of it! But, when you've been reading on here for a while, you realise that CH isn't rare at all. And, the problem is all down to worship of the TSH by doctors who don't even understand what it does or why it exists!
Another thing they know nothing about is symptoms. They haven't learnt them, that's why they ignore them.
The paper in the link below is brilliant. It mentions Jostel’s Index, although it calls it low TSH Index.I had to be re taught algebra by a more diligent friend, but it’s indispensable once you do, because there just doesn’t seem to be any other way of proving you’re right.
I don’t think CeH is rare at all. The way I acquired it, by obstetric haemorrhage, happens all the time, and I read elsewhere that your chances of ending up with pituitary damage are 1 in 3. Even if they aren’t that high, I think there are a lot of women suffering without diagnosis.
Tsh worship is an absolute curse. Apparently they can measure it very accurately- but they really don’t know what they’re measuring. The other tests are more expensive and less precise, hence the reverence for tsh, but you get weird results sometimes like the one I showed you, and as you say, clinical symptoms mean nothing now.
I feel a bit reluctant to mention Jostel to my endo in case it puts his nose out of joint, but I would love to speak to someone who took it seriously- I can’t remember without looking it up but I think the reference range is something like 2 to minus 4- mine is minus 9!
No, I don't think CH is rare, either, but doctors do. I think it's just another way for them to get out of diagnosing hypo, because that is something they hate doing, and will go to extreme lengths to avoid it!
Yes, I would think there are an awful lot of women out there who have it and are undiagnosed!
The ratio of tsh to t4 is meant to fall between 1.3 and 4.1Less than that implies CeH according to Jostel, hence my excitement at mine being-9.
Kind helvella has put up a spreadsheet which calculates it for you beautifully, although not on an iPad- I had to remember how to do it with pencil and paper. I just wish now I could find an endo who would take it seriously ❤️
To tell you the truth I have no idea! I know the diurnal rhythm of tsh is meant to be low in the afternoon, surge in the morning, higher at night, but no doctor has ever mentioned this when evaluating my test results- I can only imagine they don’t consider that samples could be taken in the evening or at night? Since thyroid endocrinology is overwhelmingly concerned with primary hypothyroidism, and they seem keen to minimise the patients’ illness, the low afternoon level presumably suits them fine!
It certainly does suit them! But, none of them even seem to know that TSH varies throughout the day. They seem to think it doesn't matter when you have your blood draw!
Seriously, I suppose the log linear nature of the relationship means that smallish variations of the order of the diurnal swing aren’t important. If I find out I’ll tell you!
Yes, sorry, but that makes me laugh. It's just so ludicrous. It's a bit like being subclinical pregnant, it's meaningless. Either you are or you aren't!
Hi GreyGoose. Please could you tell me more about buying your own online? I'm at my wits end trying to get a proper dose from my doctors. With my free t3 and t4 in range (such a big range for "normal"), they won't help me. I don't know how to find a safe source to buy online on my own (I'm in the UK). I've avoided doing this for years, but I just don't know what else to do right now. Thanks!
Ignorance about central hypothyroidism even among endocrinologists and certainly among GPs. I feel that if they don’t know about something they really ought to read up about it. I can’t afford this.
Also because although they are all nhs endocrinologists the one I have now doesn’t agree with the first two, so although he’s a lead nhs endo they apparently don’t have to take his word for it (and will not spend the time reading up to inform themselves!)
This is probably a silly question, but just out of caution: The FT3 level you're reporting here was given to you in a printout or by phone? Just want to make sure someone didn't misread the number to you.
It’s certainly happened to me with hospitals before- at the time of the original haemorrhage I was very ill for a fortnight because someone read Hb of 6 upside down as 9! But I read this in a letter- the endo who rang me had read the lab results x
It’s certainly happened to me with hospitals before- at the time of the original haemorrhage I was very ill for a fortnight because someone read Hb of 6 upside down as 9!
I met my present nhs endo through a Facebook Sheehan’s group. He is very good, but my gp will not accept his request to issue levothyroxine prescriptions.
I do think it’s probably worth asking my endo (who I will have to pay privately) to check the hospital lab results-as I say, I have known this to happen) x
I have secondary hypothyroidism and have been on 175mcg of Levothyroxine for a couple of years so my TSH is virtually zero. I have had over range FT3 results but my Endocrinologist was never concerned about it and never changed any medication.
I had some other issues with pituitary hormones but no diagnosis. The GP rang and was just going to treat me for primary hypothyroidism so I refuted their diagnosis, ended up seeing a different GP face to face, not that I asked to and I had to quote the NICE CKS to them! I then got referred had an MRI and have a 7mm cystic like tumor. Even then the first Endocrinologist I saw was a diabetes specialist. I dumped him and saw one privately who put me on his NHS list.
Wow! I hope the surgery has taken care of the problem, but you really did show them!My pituitary on the other hand, apart from its pitiful failure to produce tsh looks ok - even slightly ‘puffy’ as the endo says.
Treated CeH looks very different from primary hypothyroidism.
In what way different? I know CeH is different at diagnosis but what are the differences on treatment?
What tests did your endo do to diagnose it?
I may have CeH but it’s not diagnosed. I haven’t suggested it to GP yet. But I have some similarities to you: suppressed TSH, high FT3, over range FT4 - and only on 100mcg Levo. (If dosing by weight I’d be on 116-120)
At the moment I’m skipping my levo once a week to lower my dose but when GP gets round to noticing that my blood test a month ago came back with a TSH of 0.01 I’m going to request taking 100 and 75 on alternate days. Not because of the TSH but because the FT4 is too high. However, it isn’t giving me any problems (may not be reaching the cells) so maybe I should leave it where it is!
I’m sorry you’re feeling so unwell and outraged that your GP is ignoring the endo’s advice to treat you. I’d change my GP.
I’m sorry, my copying and pasting isn’t working (old fool). The paper I mean is called Diagnosis and Management of Central Hypothyroidism in 2018 by Luca Persani, and it’s very helpful x
I’m thinking of changing GP too, but I don’t really want to go to a new one with notes that make me sound crazed- I really hope to get this sorted out at least a bit first!I think the main practical difference is that if you are getting enough levothyroxine to treat CeH successfuly, your tsh is always going to be suppressed. Mine is only 0.1 to start with, and will obviously go down further with treatment. This seems to be too hard for a lot of both GPs and endocrinologists, and I am not sure if there is really a way to distinguish between this suppression and that of hyperthyroidism. I suspect the endo I see now just believes me, and he is a leading endo in his department so others believe him (with the exception of my GP!). GPs are taught to treat by tsh so they freak. This is why mine won’t treat me at all whatever the consultant says. I’m going to try to attach a paper which would be very helpful if my GP would read it, but I don’t think they are under any obligation to educate themselves to help you unfortunately.
Thank you, Ginny, both for your detailed reply and for the paper, which I’ll definitely try to find and read.
Don’t NICE guidelines say, somewhere, if it’s CeH don’t treat by TSH? And surely, once GP refers you to an endo, all GP has to do is follow the endos advice, cos that’s the whole point of the referral?
The paper is really good, and well worth it. Sorry about my feeble attaching!The GPs would probably have been happy enough if the endo they had referred me to in the first place had believed me, but although two (top!) private ones did, they then said they would only accept the word of an nhs endo. So I found one, and they won’t believe him either, because he disagrees with their ones!
I'm still very confused by your results. Forgetting my long winded story my blood results are very much like yours. I'm on 200 mg thyroxine and have been for 25 years I started on 100 mg.
But never has my t3 been that high.
4. Something to 5.3 max.
Have you had an mri? I can not understand why given our nhs why you are having to pay.
Considering I’m only taking 75 mcg of levothyroxine- yes! I think there’s something wrong with the test. I don’t think it’s possible if you aren’t taking extra liothyronine, which I’m not.
Having to pay is pretty miserable- I can’t afford it. I also have to pay the endo privately, which is another £100 for a telephone appointment. My last nhs appointment was a telephone one and it was hopeless- the phone line was terrible and she didn’t seem to take anything in, including the fact that I’m not actually getting nhs treatment- I’ve spent huge amounts of money, on pension credit at that!
Yup, I did indeed lose about half the blood in my body during a second trimester miscarriage. There was a huge mess getting me to hospital and I was lucky to survive. This took place in 1993, and I haven’t been able to get hospital records, because I wasn’t in the hospital at the time, although I had emergency surgery eventually. There was then another mess- I was very ill for a fortnight, with a headache so bad I couldn’t stand, and then a doctor rang and told my husband she thought someone had misread Hb of 6 upside down as 9- I then had 5 transfusions. A huge ******* all round!
You got it!Dr Vanderpump is one of the endos I went to see. He only does private work, so although he was happy to prescribe for me, my gp wouldn’t do it- he called him a greedy monster preying on stupid women, which is a bit thick as he is a former president of the BTA.
I then found the current endo (also a well known one) recommended by a woman who contacted me through a Facebook Sheehan’s group, but the gp won’t accept his prescription either, even though I’m now a patient at his nhs department.
It really is!My only doubt at the moment is that my notes tell their story and I don’t want to leave with notes that make me look crazy, but this isn’t much good
Have you actually read what’s in your medical records
What ever is in there goes to new GP
You might be astonished at how little is recorded
Or what incorrect things are listed
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Personally I have had severe gluten intolerance confirmed by private endoscopy and letters from leading gastroenterologist (nhs wouldn’t test as coeliac test was negative) .....yet absolutely nowhere in my NHS record does it mention that I have gluten intolerance
I did- the entries referring to the endocrinology episodes are neither flattering nor accurate and you can guess which party comes best out of it!When I’ve spoken to the nhs endo I’m with now, and made sure that he has written to the practice so as to leave no doubt, I’ll speak to the practice manager about the notes. But this may not be possible until things are back to something like normal- none of it can really be done via telephone appointments.
All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Waste of time paying to see endocrinologist without getting full thyroid and vitamin testing done BEFORE Consultation
Otherwise waste of time and money
If vitamins are low, improving by supplementing is first step and then retest thyroid and vitamin levels again in 6-12 weeks
If thyroid antibodies high, getting coeliac blood test done before trialing strictly gluten free
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
I would ask my gp to do tests but I’m not on good terms with them thanks to al this endo mess. My vit d is always in the gutter, so I should just restart taking it anyway. Xx
Yes- setting my t3 result aside because I think there’s something wrong with it and it needs to be done again, my ft4 is really quite good and I ought to feel better than I do! Thank you xx
This week’s financial priority is going to be making sure I don’t run out of levothyroxine, but I think I can assemble enough vits to top up to a reasonable level without biotin (an additional problem I could do without!)
My ultrasound scan- before I was treated, I had a pretty substantial lump on my thyroid, which has now thankfully subsided (also several ‘cold’ nodules)
I always take it before bed because of the faff with not eating in the morning.I don’t think it’s possible to make a mistake, the differences are to clear cut.
Cold, constipation, being unable to stay awake (to say nothing of the hair horror).
I’ve been taking thyroid meds, mostly Levo, for five years now, with occasional interruptions because of doctor problems xx
I always take Wockhardt- because of all this carry-on with having to pay. I get them in bulk when I pay for the prescription so that the pharmacy don’t run out, which is otherwise another potential problem!
humanbean is the wise member who identified my problem as pituitary damage from obstetric haemorrhage when two lots of hospital endocrinologists had got it completely wrong, and to whom I owe a great deal!
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