Eltroxin or Synthroid
I’m going to see a new NHS endo in May. I last saw him privately in September, and he prescribed 50 mcg of Levo- not really enough, but he wants it to be low for testing- I might have to be tested with no exogenous thyroxine at all. My gp will not prescribe in the meantime, and I will have to buy some online without prescription- I see Eltroxine or Synthroid- does anyone have experience of these? I’m taking Wockhardt just now.
Thank you!
A doctor that wants you to stop your thyroid hormone replacement so that he can do tests should be avoided like the plague! There is no justification for it. And you're paying for this?
Presumably, you had testing before you started levo, when you were diagnosed, aren't those results good enough for him? Plus your results on 50 mcg levo. If you had a misdiagnosis and were taking levo when you didn't need it, you would have noticed by now. What you need now is an increase, not messing around and acting as his private guinea pig. I'd give him the old heave-ho, if I were you, and find someone who has a vague idea what they're doing.
I agree, greygoose.
No-one has ever supplied a rational basis for stopping thyroid hormone in order to do tests.
A body which is significantly hypothyroid will behave differently to one that is just a bit under-dosed, properly dosed, or over-dosed. Why put someone into such a grossly abnormal state and then believe tests done at that time?
Well- he might not do that. I’ll give you some background-
The problem is disagreement between endos in diagnosing secondary hypo. My most recent untreated bloods are t3 and t4 at the very bottom of range with tsh 0.1.
I got trapped in a cycle where I became ill, went to expensive private endo, he prescribes t4, I go back to gp, gp sees suppressed tsh and stops it again- and then the whole thing over again. The gps know nothing about suppressed tsh in secondary hypo*. I thought this might be better this time because the endo has both nhs and private practices (which would stop the gp saying he is a venal exploitative charlatan), but apparently not, and I have run out of the t4 the endo prescribed.
I might not have to stop t4 for the dynamic tests, but otherwise I don’t see how they can be sure that I am really not making tsh, and that it’s not just suppressed by exogenous thyroxine. I know there is the trh test but I’m not sure the same doesn’t apply. I am pretty appalled by all this, and really want to stop it happening to anyone else.
* and unfortunately the first nhs endo I went to said I had subclinical hyperthyroidism. My Ft4 was 9!
Afraid I have got to the point at which I can see value in tests but what patients feel like is so very much more important.
Empirical treatment - try it, does it work? If so, keep going.
Yes - a TRH test might well make sense. All that is needed is to see your TSH NOT go up as much as they think it should.
The two very grand endos I paid privately, and lovely Dr Peatfield, were all of this opinion, but it falls apart at primary care level because they are trained to ‘normalise’ tsh, at the cost of all other considerations. My gp refused to do my prescription because failure to observe guidelines would invalidate her MDU cover.
I suggest that what would actually (and properly) invalidate her cover is failing to properly treat a patient having been specifically advised by two endos!
Do you know which MDU?
Have you thought of trying to contact them?
I don’t-
I really do want to go into the problems I’ve had with a view to improving diagnosis and treatment of Sheehan’s Syndrome. I won’t name my nhs trust here, but the experience has been truly hellish, and when I get my own treatment sorted out, I will do what I can to change some things.
The fact that my tsh was abnormal by orders of magnitude in the first place withstanding, presumably.
I've been told the same despite outlining clearly that I was still hypo. It's a Twilight experience when a doctor says helping you feel better is 'more than their job is worth'. Exact words.
So what did you do? What happened? Did you get diagnosed? Xxx
I resorted to upping my dose on my own. However some months later I went to see another doctor in the same practice and she tested my tsh which came down to just around 4. This doctor then reduced my levo 75mg. I have given up expecting help from any nhs gp. They panic when your TSH drops. You can say you still feel awful all day long. They feel it is too risky to give you what you need to feel better. But at the same time your TSH is too 'good' (within the exalted range 4 is good apparently) to justify sending you to an endocrinologist (TSH is king) I realised the problem is not the doctor the problem is their training. I've seen several. All the same hymn.
No, I saw him privately, but he’s taking me on as an nhs patient- I explained in more detail to helvella below xx
OK, so it's a case of proving Secondary Hypo? Have your other pituitary hormones been tested? I would have thought that was the first step. It really does seem unnecessarily cruel to stop your levo. How long would they keep you off it to see if your TSH rises? That does seem like a most unsatisfactory way of going about things.
It was really my idea, and a bad one at that, that I would need to give them a clean slate. I had a previous endo, who I think was actually negligent, and because of his (mis) diagnosis of subclinical hyperthyroidism I keep getting my t4 withdrawn. The private endos are happy to prescribe empirically, but nhs gps then say that they can’t accept this.
It was Thyroid Uk (humanbean) who pointed out that hyperthyroidism was not consistent with rock bottom t3 and t4, and that major obstetric haemorrhaging causes hypopituitarism (Sheehan’s Syndrome). My god you have to be determined though! I found a Facebook group for women who had had this bit of good luck, and those who weren’t diagnosed at delivery have commonly had to fight like tigers for twenty plus years.
The endo I’m going to in May was recommended by a woman I met in that group- he will test for other deficiencies. Human growth hormone is the most common, and if you can get it prescribed it can make you feel almost human apparently. The tests are dynamic challenge tests- serum tests don’t often show it. The last one just wanted to prove me wrong, and refused to test properly. Xx
Yes, I understand, it can be a struggle to get diagnosed with Secondary Hypo. Which is difficult to understand, because it's well documented. They just will not take their heads out of the sand and actually read up on it.
Human Growth Hormone is wonderful stuff. And, a lot of hypos could probably do with it. But, it's very, very expensive - not as expensive as T3 is in the UK these days, but expensive all the same. And, it's difficult to handle because it has to be self-injected every day, and the HGH itself has to be refrigerated at all times. I had it for a couple of years, but I had to pay for it myself. And, as it's illegal in France, I had to go to Belgium to get it. But, it was worth it! Wish I could still afford it.
The whole thing is a terrible situation. And, I do wish you well. But, if you can avoid going of your levo for any length of time, it would be better. 
I just wrote you a long reply which has vanished- I’ll have to send it from screenshot. I think my internet connection is dodgy!
Is hgh not available in France? How can that be? X
It's available for children, not adults. I explain it in this post:
I think so very much on sober reflection, especially as it took a couple of years of treatment to become anything like normal, and I think I’m just too old to do it all again!
My gp’s suggestion was that I should ring the new endo and get him to prescribe it and I guess I’ll do that. He prescribed three month’s worth when I saw him, because he thought he would see me in his clinic before I ran out, but the other gp at the surgery was obstructive and wouldn’t do my referral so it’s taken longer than that. The one I had this recent tiff with was actually very helpful about it and did refer me- I like them both and believe them when they say these guidelines are rigid- I know they have very little freedom these days. She should probably have read up on secondary hypo, but I can’t very well insist in the current climate- she is currently having to plan for a fifth of the four thousand people in her care to die of the plague with no help from government!
Getting pituitary hypothyroidism diagnosed is very hard- how did you manage it? When I get through this I’ll do as much as I can to help. The local trust is particularly bad in this way. My gp says that the local head of histopathology rang her up about my results which implies appalling ignorance on their part- an old friend of mine did that job at the same hospital for many years and I will follow this up. I didn’t go into too much detail with her because the meeting was a bit fraught, and I will be on firmer ground if the tests confirm what I say.
Oh hgh- it would be so nice to be less tired, but what I really want is the ITT test because as you say another pituitary deficiency would help to confirm the tsh deficiency- come to think of it it would involve much less suffering on my part than months of hypothyroidism, and I am less confident about my cortisol than they are (although my previous endo was a sort of malicious buffoon (forgive prejudice),
Xx Ginny
I like them both and believe them when they say these guidelines are rigid
How can 'guidelines' be rigid? Rules are rigid. Guidelines are not rules. The doctor can still use his discretion. Guidelines are just what they say they are: to guide, not to dictate.
Getting pituitary hypothyroidism diagnosed is very hard- how did you manage it?
I don't have Secondary Hypo. I have Hashi's. I just know about it from reading on here.
my previous endo was a sort of malicious buffoon (forgive prejudice),
No forgiveness necessary. I've met so many of those! Not necessarily endos, but doctors in general. They take an absolute delight in proving their patients wrong, proving that there's nothing wrong with them. And, the phrase I hate most in all the world is: yes, actually, you do have a problem there - but it's not bad enough to treat!!!! Try living with it, you pompous baboon! Yup, been there, done that, hate them all.
Is hgh deficient in many primary hypo people?
That is a theory that a hormone specialist I saw told me about. He said that you need good levels of T3 for the pituitary to be able to produce HGH. But, you also need good levels of HGH to convert T4 to T3. So, it's very likely that anyone who is hypo has low HGH. But, it's rarely tested for, so no-one knows for certain. Mine was very low. Possibly isn't any more because I'm on T3 only.
Mm. I was on t3 for a while, but if I want to show a low gh level on testing, which I obviously do, then a low dose of t4 in the weeks leading up to the test looks like a good idea- although ITT should show my ability to produce it rather than the level at any given moment, which is very variable.
Good to know!
No, yours is an entirely different problem. If your HGH is low, it will be because the pituitary is not functioning correctly. Nothing to do with the T3. So, your level of T4 won't make any difference.
If your pituitary isn't functioning correctly, it won't matter how much T3 you have in your system, your HGH will still be low.
Be aware that any Eltroxin you can buy is exceedingly unlikely to be the same as UK Mercury Pharma Eltroxin. It could be Aspen product, or GSK India or Bengladesh, or something else.
Both brand names, Synthroid and Eltroxin, are widely used by people trying to sell levothyroxine products to attract search engines and those searching. Start out assuming that anything offered is not what you will get. You might find the real thing but do everything you can to check.
Better still, don't go down the crazy path that the endo appears to have mapped out for you. Especially as we can all imagine that NHS appointments are all too likely to be repeatedly delayed. Though your GP is just as culpable.
I saw some very helpful correspondence from you on here from a couple of years ago- I didn’t know that! It’s only for a couple of months until I see the new endo, so I should think it will be fine. The Synthroid was from Canada- would that be different? I’m a bit cross that I’ll have to pay 50 or sixty pounds, but so it goes. This has now been a three and a half year nightmare, and I feel very let down- I would like to stop this happening again. I was thinking of writing to Professor Wass- nhs endocrinology has to be better than this.
So long as it is genuine product, that is likely to be Synthroid manufactured in Canada by Mylan in some form of licensing deal with AbbVie (the real owners). I think that most Synthroid not distributed in the USA is what Mylan make in Canada.
(Do bear in mind that these things change and I am passing on what I understood to be the case a little while ago.)
Unless I do, I will end up self-treating permanently, and I just can’t afford it. There is also the question of testing for other pituitary deficiencies, which I can’t self-fund.
Eek Ginny52 - seems barbaric!
Presumably he’s thinking along the lines of a kind of hypothyroid ducking stool: if you become very ill then you needed the thyroid hormones, if you don’t you’re burnt as a witch.
Whatever happened to the Hippocratic Oath? 🙄 It makes me cross.
He hasn’t actually said I need to be off it- I just wanted to be prepared, and to give my tests the best chance of working! The other endo, who caused the withdrawal of my t4 the last time, blamed me for confounding his tests by taking testosterone, which had been prescribed by an nhs gynaecologist because mine was so low- it’s all been a bit of a nightmare. The only person really to blame for this mess is him- the new one is nice, and if he just does his job I’ll be fine xxxxxx
Hi Ginny52
I have taken Eltroxin Levothyroxine for a good 2-3 years and have never had any problems with the. I changed after discovering that it's the only make that doesn't have a filler in called Microcrystalline Cellulose in it, which caused me great problems for a year before I discovered why. It took me a long while, and lots of research before I found Eltroxin.
Best wishes
Jenny N
That’s interesting! Thanks!
I think there is some bad information going around. At least two other UK makes do not contain microcrystalline cellulose. (And Mercury Pharma Eltroxin and Mecury Pharma Levothyroxine are the exact same product.)
Accord (Actavis) has:
Lactose
Magnesium stearate
Maize starch
Pregelatinised maize starch
Stearic acid
medicines.org.uk/emc/produc...
Wockhardt has:
Lactose
Sucrose fine powder
Maize starch
Magnesium stearate
medicines.org.uk/emc/produc...
I am amazed at how different people differ in their reaction to different brands, and even more amazed that people who should know better deny this- British Thyroid Association for one!
Wockhardt would be my brand of choice- maybe this is why.
When I started taking levothyroxine, whilst I was aware of people finding the available formulations having different effects, I was adamant that would not happen to me.
After a few months, I had suffered from the sub-potent "old formula" Teva. From then on, I took care and realised that they are all different. Sometimes immediately obvious, other times subtle and only becoming evident over time.
I tend to accept that everyone has their own ideas and theories as to why, and they could well be right, but it is so easy to make assumptions.
What I can’t work out is whether it’s something that is present in the ‘good’ brand, or absent in the ‘bad’ one. The oddest thing of all is that this varies between individuals, but I know it to be so from personal experience.
I don't even assume it is the ingredients!
For example, for oral solutions of levothyroxine, the manufacturers dissolve the levothyroxine in an alkaline solution (it pretty much doesn't dissolve in acids or neutral water), then acidify it. This stabilises the solution.
So it isn't so much what the ingredients are as the order in which they are put together.
Similarly, although there actually was also a change to ingredients, when GlaxoSmithKline Eltroxin was moved from being made in north America to Germany, they also changed from a wet process to a dry process. Who knows whether it was the process or the ingredient change?
And when old formula Teva was withdrawn, the listed ingredients were unchanged. But the source of the dextrin was different and this dextrin behaved differently - which affected how much levothyroxine could be absorbed.
I suspect that at least a part of the differences is how quickly and effectively we absorb the levothyroxine. And this will depend on us as individuals. Fast absorption will raise FT4 quickly. Slow absorption might be more gentle. But fast absorption might occur in products which are well-absorbed. Something like fast and complete or slow and incomplete?
After I wrote my last note to you, I went upstairs to check something. A couple of years ago, I bought a packet of t4 that just didn’t seem to work for me at all, to the extent that I felt odd and unwell on the very first day after the change, so much so that they’ve sat in my bedside drawer all this time. This morning, due to the period of short supply outlined above, I took one, and it’s all as bad as before! And they are Actavis 50mg!
It feels so odd and unpleasant that I think I’ll go back to T3 until I can get the endo to send me another prescription, on Monday I hope!
My conclusion from all this is that thyroid hormone balance is far more complicated than is generally believed. This simplistic view seems to be behind all that is currently going wrong with its practice, and really why failure to listen to patients’ accounts of their symptoms has inevitably led to a state of affairs wherein it is more at odds with itself than any other branch of medicine.
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