Thyroid UK
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My GP needs your help!

I haven't been on here for ages, as I've been really well. I was pregnant and got a great consultant who persuaded me to change from self medicating on NDT to going onto Levo. He gave me the right dose and really knew his stuff. My main concern though, was that after pregnancy, I would be under the care of the GP again, who would want to lower my dose based on my low TSH because that's all he looks at. 6 mth post pregnancy and guess what? The GP has lowered my dose of Levo due to my low TSH, despite my passionate pleas and explanations. My symptoms are all back, I feel awful. I got Blue Horizon tests done (as the GP's lab won't test for T3 despite him asking.) I have a low TSH, low T4 (out of range.) and low T3 (almost out of range.) We all know that I need an increase in Levo, but can anyone share any papers/articles/guidelines etc, that I can show to my GP to convince him? I do not want to wait another 6 weeks until my next blood tests with the GP, I can't continue to feel like this, so I am going to see him next week. I am also trying to contact my consultant to see if he will speak to my GP, but no joy yet......

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You will need a good GP .Many on here tell how when they present GOs with papers they are uninterested or claimto have too much to do.They do not seem to want to continue their education.

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It’s so frustrating....

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Hi Eleanor

Unfortunately it can often feel as if doctors are not doing anything but they are bound by guidelines (such as nice guidelines) when it comes to medication and blood ranges. if you have been familiar with Self Medicating this may be your best option until guidelines meet or reach reality of thyroid treatment.

I for one would love to be under the care of my gp with regards to my thyroid medication but as the current guidelines fall well below what I require I choose to self medicate.

I am personally happy to do this until the Doctors are beyond the binds of nice guidelines etc. Our current only hope that this issue is being debated in Scotland we can only hope and dream they are successful and then normally all other areas are 2 years behind Scotland when it comes to implantation of protocols/procedures.

I hope others may have a better solution,

Regards

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Thank you. I fear that you are right.

Did you ever consider taking whatever Levi they would give you & “topping up” yourself, to get the medication level you need whilst still being under the GP care. I understand they wouldn’t like it, but what can you do?

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Hi Eleanor, I had been on levo for 25yrs and I believe it to have many side effects so I switched to NDT. I take Thiroyd and I have never looked back I feel amazing. Even the thought of taking Levo again is horrendous.

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Thanks. When I was on the right dose I felt really good on levo. (Just as good as I felt previously on ndt) it’s just they gave it me, then took it away....!

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The gp will stop the prescription if the TSH is so suppressed, that's all they care about!

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Thats Exactly what i do...

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Top up your Levo? Does your GP know that?

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Just google CENTRAL hypothyroid print off the best article and go an educate your doctor who clealy only has limited knowledge of Primary hypothyroid which is a very different entity

You must never never never be treated using TSH only t4 and t3 which on levo must bith be near top of their ranges...whereas on NDT only T3 will be at the top and t4 nearer the bottom

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Ps. L love your username! 😝

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Speak to louise at Thyroid UK she’s fantastic. You’ve enough to cope with post birth without this!!

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Thank you! What is her email?

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enquiries@thyroiduk.org

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Thank you so much for taking the time to tell me.

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you need to get an appointment with your consultant asap or change GP's. I believe it is not acceptable for a GP to challenge a consultants decisions without another referral. It is not recommended by NICE. So your GP is way off the mark here and acting dangerously. However, GP's can no longer give you T3, and if your levels are as low as you say then you need to go back on the NDT before you damage yourself. I'm interested in why you were persuaded to come off NDT in the first place, surely you would have done better while pregnant with a full range of t1, t2, t3 etc which NDT offers rather than just t4's

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That’s a long story but a deceision I didn’t take lightly. I think it was right at the time, but like I thought, it can’t last, & I’ll either have to top up my measly dose of Levo with NDT or just do NDT alone.....or manage to contact my consultant & see if he make my GP see sense.

In the short term, I think I’m going to “top up”.....

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oh sorry, I shouldn't have pried, I didn't mean to. I was questioning your consultant's choices in order to better understand. If it was right at the time then it was. I think that topping up now would be the best thing to do too

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Not at all, I didn’t feel like you were prying, it just is a really long story & I didn’t want to bore you! 😝

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Thyroid hormone replacement - a Counterblast to guidelines. This is written by Dr A Toft. He was one of the original doctors who gave us the guidelines that have left many of us so ill.

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Muffy, am I misunderstanding? Are you saying Dr Toft was one of the doctors who gave us guidelines that left many of us ill? I thought he was helpful.

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If you read the document, Dr Toft actually says he was one of the original authors of guidelines, he has now come full circle. When Dr Skinner was struggling with complaint after complaint from various doctors, he could have done with this support. it seems Dr Toft has listened to patients in how they don't feel well on thyroxine and that they put on weight as well. Patients used to be given larger doses because doctors weren't confined by the TSH levels because they didn't have that test, hence enough thyroxine was given so that the Ft3 levels would be high enough for the patient to regain full health.

Hopefully now, the tide may turn.

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Just go back on NDT.

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If you could buy some T3 you could then top up your Levo without having to bother with the GP.

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Yes, it’s just the cost & the difficulties of getting hold of it, that means I’d rather. if I don’t have to. But it’s looking like I have to.....

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Dear Eleanor, I was diagnosed with Hashimotos and my TSH was way out of control 6 months after the birth of my son. I felt terrible within the "ranges" for 13 years on thyroxine. I switched to NDT with a doctor's guidance almost a year ago. I would never go back to Levothyroxine. Have you thought about a.consultation with a doc who advocates.NDT?

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Do they exists?! How do I find one?

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Yes, they do! I've even heard some GPs do this too...I expect people here can help...Mine's in Italy, so maybe not so practical for you....I remember seeing a list on stopthethyroidmadness dot com ...

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there's plenty out there, Dr Zacharia at Spire Gatwick charges about £150 for first consultation, £100 for subsequent, and gives prescriptions for NDT which cost me £23 a month from Alium. Alternatively, you can buy from <named source removed by admin> based in Canada (I'll PM website details), around £25 per month for me but occasionally you get done for taxes @ around £20 per delivery but as I get 6 months supply at a time that's not much spread out.

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Thank you. Up until last year, I did buy T3 from here, but due to increasing costs & decreasing earnings, I was really hoping that the Levo & the Gp would work out, but it’s obviously not meant to be.

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I am in Stockport, near Manchester. Do you know of any consultants near me, or to how to find one. I am going to email Louise and check out stopthethyroidmadness.com as well.

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I have a low TSH, low T4 (out of range.) and low T3 (almost out of range.)

Your GP can bleat on about guidelines as much as he wants. He doesn't have the right to kill you. And if he doesn't get you tested for central hypothyroidism he could kill you eventually.

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A simplified explanation of how the thyroid gets told what to do...

1) The hypothalamus (in the brain) monitors your thyroid hormone levels. When more thyroid hormone is needed it produces something called Thyrotropin Releasing Hormone (TRH). Thyrotropin is an alternative name for Thyroid Stimulating Hormone (TSH).

2) The pituitary (in the brain) monitors levels of TRH. When the levels of TRH rise the pituitary will release more TSH.

3) The thyroid monitors levels of TSH. When the levels of TSH rise the thyroid will produce more thyroid hormone.

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But things can go wrong at any point in this process.

1) The hypothalamus may be unable to produce enough TRH due to disease or damage. If this happens the pituitary will produce too little TSH, and the thyroid will therefore produce too little thyroid hormone. This problem is referred to as tertiary hypothyroidism.

2) The hypothalamus may be perfectly healthy, and send the pituitary the correct instructions. But the pituitary may be unable to produce enough TSH due to disease or damage. If this happens the thyroid will therefore produce too little thyroid hormone. This problem is referred to as secondary hypothyroidism.

3) The hypothalamus may be perfectly healthy, and send the pituitary the correct instructions. The pituitary may be perfectly healthy, and send the thyroid the correct instructions. But if the thyroid is diseased or damaged it will produce too little thyroid hormone. This problem is referred to as primary hypothyroidism.

When doctors discuss secondary and tertiary hypothyroidism, but don't know which one applies, it is referred to as central hypothyroidism.

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Central hypothyroidism is identified by having low TSH, low Free T4, and low Free T3. You have all these. You need to be investigated by an endocrinologist to find out why you have low TSH when your Free T4 and Free T3 are also both low.

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The treatment for all three kinds of hypothyroidism - primary, secondary, tertiary - is the same - replacement of the missing thyroid hormones. Treatment for someone with secondary or tertiary (i.e. central) hypothyroidism cannot be monitored and treated according to the TSH, patients have to be monitored and treated according to the levels of their Free T4 and Free T3.

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Did you bleed a huge amount when you gave birth? If you did it is possible you have a condition called Sheehan's Syndrome. This is one cause of central hypothyroidism.

en.wikipedia.org/wiki/Sheeh...

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The pituitary produces lots of hormones. A pituitary which is unable to produce sufficient TSH will have to be tested to see if the levels of other hormones are adequate, because they would need to be supplemented if levels are too low. This condition is called hypopituitarism. If all hormones produced by the pituitary are low then the condition is called pan-hypopituitarism.

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Thank you, this is really helpful.

I have given birth 3 times but there was no significant blood loss....

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There are other causes of central hypothyroidism besides Sheehan's Syndrome. I just mentioned it because you had mentioned being pregnant. :)

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Thank you, I’m going to look into it. I hadn’t heard of it till now....

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Cracking explanation Humanbean!

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Thank you! I do hope it is reasonably accurate, even if it is simplified a lot. :O

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It's useful for me because I hadn't realised there was tertiary hypothyroid, and that the term 'central' covers both that and secondary!

Something I'm confused about is whether central can be confirmed with an MRI? Or can a TRH test be done that distinguishes between tertiary and secondary?

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I know that TRH tests are possible, and that they used to be done far more than they are now. But who would do such a test and under what circumstances I have no idea. I think the TSH test is considered to be far more useful these days.

en.wikipedia.org/wiki/TRH_s...

Regarding what an MRI can see, if there is a tumour on the pituitary then that can cause problems, but I have read that they (pituitary tumours) are sometimes just a couple of millimetres in size and can be very hard to spot.

If the pituitary is stretched or squashed or empty* and central hypothyroidism is suspected then it would be suspicious I would think, but I think they would still want to do various blood tests.

I imagine that tumours can develop on the hypothalamus, and no doubt damage can affect that too, but I don't know any specific names for the problems that might arise for the hypothalamus.

* en.wikipedia.org/wiki/Empty...

I can't really add any more to the subject of central hypothyroidism.

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Thanks! That's a lot I do not know :)

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I had the same thoughts!

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Thank you Human Being, the best explanation of the different types of Hypo I have ever read. I'm going to give a copy to my GP, he is a sweet soul who does as I ask. I like to educate him and fortunately he seems to like to learn. He won't see a better explanation than what you have written here.

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let's hope he doesn't turn around and say it's a load of crap! :D

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Wow Humanbean - this is the best explanation I've ever read of secondary and tertiary hypothyroidism, thank-you very much!

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Have sent you a pm

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Why not go back to self-medicating if you felt well doing that, previously?

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I defo will if I have to, but I do wanted Levo to work out for me, so I could avoid the massive cost of self medication & blood tests & the increasing difficulties of getting my hands on it......

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See how you feel on levo with top up NDT, till you feel better?

Might it be worth writing to the consultant you saw, & copying the GP in on the letter so he knows the consultant knows he's letting you down. :D

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Oh, I love this idea! Letting him know I mean business, without having to have an awkward confrontation! I’m going to do this.

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Good I hope it works out for you

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I’m one of the lucky few who got prescribed NDT on NHS but, I have to pay to top up myself as there’s no way they’d agree an increase plus the appointment s are so far apart so I dose on how I feel and use their blood tests as a barometer. It’s not easy and it takes a lot of monitoring but at least I’m somewhat in control

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Probably the easiest way is to buy your own Levo to top up the amount prescribed. I dont know where you would get it from but I'm sure you will be able to find out from one of the lovely helpful people on this site. My TSH is supressed on levo but my GP just put 'Normal for this patient' on my notes so none of the other GPs try to lower it ! I also have a mixture of Levo, 25, 50 and 100 so I can adjust it myself if I feel over or under medicated for more than a few days. Val

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An update:

I had an appointment with my GP late yesterday, I explained all my symptoms & I showed him my private test results which showed low TSH & also low T3 (almost out of range) & low T4 (out of range.) He looked confused, then shocked then confused again!

I asked him if he’d seen many cases like this. (admittedly, I asked to force the answer that he then gave me.) He said no, but that could be because he rarely gets to see anyone’s T4 level & it’s even rarer that he would get to see anyone T4 & T3 level. (I paused to let him consider that for a moment.)

He agreed that going off TSH alone made it seem I was over medicated, whilst looking at the big picture showed I was under medicated.

I told him that ironically I could only see my consultant when I was pregnant but that I couldn’t get pregnant with these results, or worse, I could & the baby would die.

He said his hands were tied & he couldn’t increase my dosage as it’s against the rules with my TSH. He said he’d talk to “Steve in the lab” about the possibility of me (not everyone!) being “allowed” to get a T4 & T3 test along with my TSH when I get my bloods done. I pointed out, that whilst that be very nice, it doesn’t mean a lot if if we have the results but can’t medicate them appropriately!!!!!! & talk to a colleague about “my situation.”

He asked for a copy of my results & I said I was happy I could help him! 😝 (he’s lucky they don’t charge at my surgery for results printouts, or I might have charged him!)

He’s a lovely guy, but clearly that doesn’t help me.

I left, letting him know that I was going to “top up” the Levo he is giving me with my own NDT/T3 until I was well again.

There was no “win” for me, but it was worth it, just to see his “mind blown” face!

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Did you mention the words "secondary hypothyroidism" or "central hypothyroidism" to him?

Some links on the subject that your doctor may believe :

gpnotebook.co.uk/simplepage...

cks.nice.org.uk/hypothyroid...

See page 28 in this link : btf-thyroid.org/images/docu...

Your doctor should refer you to endocrinology with results he doesn't understand. He can't just leave you to rot!

And central hypothyroidism happens for a reason - that reason needs to be found and acted on if necessary.

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I do intend to, but I decided not to yet. I want him to focus on trying to get the lab to agree to T4 & T3 testing 1st, then that will be my next step, (amongst other things like writing the letter/holding someone accountable for under medicating me/pushing for a consultant/fertility specialist, the list goes on & on.)

Thank you so much for the links, I will read through & print them off & talk to him about it.

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I also totally agree with the "not just leaving me to rot." I think he's hoping that I will just go away, but don't worry, I will not let that happen!

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I just at these links properly-thank you, they are really helpful, I really appreciate it.

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Hello Eleanor

This may help. My GP was resistant to evidence and insisted she knew as much as the endocrinologist so there was no need to refer me. I therefore wrote a letter to her explaining as nicely as I could that I held her responsible for keeping me unwell by not allowing me the necessary referral/treatment, and, that I would hold her responsible for the cost of any treatment necessary in future for conditions arising as a consequence of being left untreated.

It was less blunt than that, more carefully worded, but that was it in a nutshell. It worked. I was referred, first endo was useless, now I see an excellent Consultant who take good caare of me. I travel far but for good health it's worth it.

There is also someone on here who will explain to you about a group that liaises between patients and doctors that is also very helpful in your kind of circumstances. Could be called PALS, something like that.

Bts, you do know that low TSH is good rather than bad don't you?

Best of luck

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Hello again Eleanor, I have just read Humanbean's excellent explanation and see that I am wrong about low TSH so I apologise and please ignore that sentence.

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The thyroid is a complicated beast.

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Another update:

I was supposed to have a 3mth post pregnancy follow up with my consultant which hadn’t come through. (I’m now 7mths) post pregnancy.) it came through last week. @humanbean Thanks for your help. At the appointment I suggested Central Hypo to him. He agreed it was a definite possibility that needed investigating. The only bad news is that I’ve had to “come off my Levo for 3wks, (I feel like I’m dying.😓) so they can do hormone/full thyroid blood tests in 3wks, then a possible mri scan after that, depending on the results. I had never even heard of central hypo, so thank you so much!

I will keep you posted.....

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