Can your body adjust to T4 and/or progesterone and stop responding?

[Kitty1watson]

Hello, I have been on Levothyroxine for about a year. I was initially diagnosed with a connective tissue disorder and prescribed hydroxychloroquine, but this had little efffect. I was also sent for CBT, which annoyed me more than anything, as they were suggesting I was imagining the pain/weightgain and it was psychological.

Initially, not much happened on the levo, but then I read that progesterone has an impact on the thyroid's function. This was a bit of a light bulb moment, as my symptoms had coincided not only with getting a nasty infection (which is what I thought was the cause of everything going wrong), but also with me stopping the progesterone only pill (POP) after taking it for many years. It never occurred to me that it might have been the Pill keeping me well (or keeping my thyroid supported).

To cut a long story as short as I can, when I first fell ill (after getting an awful UTI in Kefalonia but also stopping the Pill at the same time), I rapidly developed aches and pains, very painful joints, stiffness and pain in my ribs and gained 2 stone within 2 months, but had changed nothing in my lifestyle. After eventually getting a low thyroid diagnosis I was put on a low T4 dose (50mcg) and not much happened. Increased to 100mcg and still not amazing but my aches started to improve. As soon as I started the POP again, all the pain and fatigue disappeared, my husband said I was like my old self again and even his family commented that they had the old me back, and, incredibly, I lost a stone within a month (without trying and for the first time in 5 long years of diets and exercise plans all to no avail). The weight-loss was rapid but stopped abruptly at one stone and I was still a stone overweight.

Anyway, I still take the Pill and T4 (100mcg) and have been adding Uni Pharma Thiroyd (from Thailand) that I bought online from Amazon - I know, please don't tell me off, I was/am desperate. I also take a thyroid supplement and D3.

*After* I started self-medicating, the endo tested me and my T3 was still in range but mid-to-high, despite being heavily over-medicated (which I admitted to the endo - I expected my levels to be way higher), my TSH was "suppressed" but my T4 was still very low in range (I think it was 12.2 and the reference range was 12.0-22 or similar). I actually felt pretty good and all my aches and pains disappeared, I didn't feel as tired (and I have a toddler, so I am usually tired anyway!) and I was starting to feel that all was not lost.

I started the additional Thiroyd on a very low dose, by crushing them and using a tiny amount, but I found it made no difference at all. I increased and increased and am now taking arguably far too much, but it has made absolutely no difference to me. My weight has now gradually crept back up by about 7lbs (so I am still a little less than I was before I went back on the Pill, but heavier than I was when the weight initially dropped off) and I can't seem to lose it again. I'm achy and tired again and my joints are sore. I feel as though my body has said, "Great, finally, some thyroid hormone, huzzah!!", but then it had a bit of a regroup and now thinks, "Actually, that's not really doing it for me anymore."

I'm sorry, that's a really long way of asking, can your body get used to a dose of medication and then need more as a result? Like fitness? When you start out exercising, it kills you to run to the end of the road but after a while you adjust and then need to run much further to have the same level of improvement.

I don't know what to do anymore, because the endo told me, after the last tests mentioned above, to stop the NDT and reduce my T4 to 75mcg, because I had clearly improved so much and didn't need it anymore (I don't think that's how the thyroid works). He said that because my TSH was suppressed I was in danger of a heart attack and even showing him thyroid books and prints outs about TSH and needing to look at the other results wouldn't change his mind. Luckily, my GP had more knowledge and let me go back to 100mcg.

Anyway, I am frightened of continuing to take the NDT because know I am taking too much (or it might just be a duff batch or a fake one for all I know, how can you ever be sure when you're buying online??), but I am not seeming to respond to the T4 or the NDT so much anymore, despite a brief improvement after starting the Pill again. I've had no overactive symptoms at all so I am at a loss really.

Sorry for a massive ramble.

[Kell-E]

If anything, I would reduce the levo and increase the NDT.

[Aurealis]

This is really complicated, not sure I understand your question. POP stabilises the sex hormones so makes it easier to balance levels of Levothyroxine. It sounds as if Levo (with POP) was an effective treatment for you, as Levo is for most people. So I’m not sure why you added NDT. You may just have needed an increase to Levo dose.

You don’t say why or when you were referred to endo. I wonder if this is a rare occasion where following endo advice is the best course, though you may need to increase Levo later. I don’t think you’ll feel well until on the correct dose for you and stable on that dose without any changes.

Good luck

[Kitty1watson in reply to Aurealis]

The endo told me to *decrease* the levothyroxine and I did that, only to feel horrendous again.

[Kitty1watson in reply to Aurealis]

Sorry, I should have said that all my results were originally low (T4 and T3) and that is why I started to research myself and tried the NDT, as the endo just told me my TSH was all that mattered and it was in range (at the start of treatment) and, later, that it was suppressed and so I was at risk of heart failure. When I got the suppressed TSH of 0.04, my T4 was still only 12.2 (ref range 12.0-22.0) and I still had hypo symptoms. Thank you for your response. K.x

[Jazzw]

Kitty, when you take any thyroid hormone that has T3 in it, your TSH is likely to become suppressed and your FT4 either low in range or even just below the reference range. The body doesn’t seem to hold on to the excess T4 when it’s being given T3.

So TSH becomes irrelevant and can’t be used for gauging whether you’re on the right dose. Many doctors and endos don’t seem to understand this. FT4 will also be irrelevant. The only test which provides a guide as to whether you’re over or undermedicated is FT3.

If your FT3 is not over-range, you aren’t overmedicated. It’s extremely likely that your doctor reacted solely to the suppressed TSH reading (and shouldn’t have reduced your dose).

Do you have an up to date FT3 result? How much thyroid hormone are you taking now?

[Kitty1watson in reply to Jazzw]

Thank you, this sounds about right. I tried to show the endo information I had obtained from reputable sources (I am a solicitor, so I know the difference between decent resources and a load of old rubbish and so it was all from decent medical authorities), but he just smiled patronisingly and said that TSH was all that mattered and if that is suppressed, I'll have a heart attack. He was very nice as a person, but wasn't having any of it when I tried to argue that I didn't think it would help to reduce the T4, just because I now seemed to be much better (he said, "you seem really well")! It was like he thought I had been cured, because I had dramatically improved (although still not back to normal) and so could drop the dose, rather than seeing that the dose was helping to make me better as it was. I asked him what the low T4 meant and the fact that the T3 was higher but still in range and he didn't really answer. He just said it was really bad to have a suppressed TSH.

I still take the 100mcg levo (GP approved, despite endo telling me to reduce to 75mcg, as I tried this and felt much worse) and, usually, add two Thiroyd tablets in the morning and another two at night. The box is mostly in Thai, but it says 60mcg and I read on a guide to different NDTs that it amounts to about 8mcg of T3 and 35 mcg of T4 per tablet. I am not sure of the expertise of that guide, because, unlike everything else I have read, it is not a medical site, but it is the only guidance I found on how much hormone is in this make of NDT.

Clearly, this means I am taking way too much, but it is literally doing nothing to me and my T4 was low and T3 wasn't over range in my last test (same dose). I have no overactive symptoms at all and still struggle with my weight, am aching and fatigued, have dry skin and constipation (unless I eat a ton of figs or prunes every day!!). I just wonder if the Thiroyd is not really as strong as I think it is, or is a fake or duff batch. I did ease gently up to the dose I take now, just in case, but nothing changed and I still feel the same. I am stuck again at about 1.5st overweight, having initially lost about a stone (after starting the POP again), and now increased again by about half a stone.

I don't have an up-to-date test and I am going to have one in a week or two - I just need to book it in at the GP.

I am going to stop the Thiroyd, as it isn't doing anything (if I gain another stone in two days, I'll know it was, actually, doing something!!) and talk to the GP again about increasing the T4, once I have had another test.

Thank you so much for your time.

[shelbydaws10 in reply to Kitty1watson]

I take 2 full spectrum digestive enzymes and 2, 10 billion acidophilus. With my meals and this will regulate you and bring ypur weight into balance again. Try walking after meals also to help you along and get your parastolsis working again.

[endomad in reply to Kitty1watson]

If you got the thiroid from the well known Thai supplier they are extremely reliable and excellent product so I doubt it's a duff batch. Store in cool place. Having a thyroid problem is like balancing 10 plates spinning on sticks, if one plate wobbles they all wobble. So you need everything tested to see what is going on including T3 vits & iron etc. Progesterone also helps me as after menopause I was estrogen dominant which competes for thyroid receptors. My cortisol is extremely low again effects uptake. So there is a lot of trial and error. My husbands best buddy is a well known and respected cardiologist who told me my years of no treatmentand under treatment did more damage to my heart than a lifetime of taking t3 will so I'm afraid I take all the heart scare stories with a pinch of salt. Unless you have heart probs or shake from over medicating I doubt you are on the verge of a heart attack! If your Dr actually thinks that, he should have sent you for cardiogram ecg etc and a bone density test as that's the other popular frightener to pull you into line!

You are an educated woman able to research and make sensible decisions. Finding what works and what makes you feel well is a personal journey we are all different but lots of us have found Dr's complete idiots regarding thyroid illness. For 2 years I gave talks to final year med students on what happened to me, how to diagnose without using the tsh test. The training on thyroid is half a day and only applicable if you fit neatly into 2 box's! ! Lots of us don't so it's a self help illness x

[Sus64 in reply to endomad]

I appreciate the spinning plates analogy. Could you tell me what you are doing for low cortisol?

[endomad in reply to Sus64]

Lol I wish I could the low cortisol is driving me bonkers! I don't want to go the steroid route, it deff helps but doesn't encourage my adrenals to get stronger so I am now on adrenavive 11 started 2 weeks ago. I have tried CT3M and my cortisol too low for that but moving my T3 doses did help my sleep. I did 6 months on NAX but no improvement. I do adrenal cocktail of salt potassium and vit c twice a day. Tbh it's a bloomin nuisance. I use to thrive on stress now I feel the life draining out my adrenals if i exercise or anything annoys me. My endo will only offer steroids and long term it's not good and I have trouble enough with my weight thanks to no thyroid without adding steroids into the equation

[Sus64 in reply to endomad]

What a hassle, right? I've tried adaptogens, no help. Now trying, licorice root, Thorne AC, and Pregnenolone. Won't be able to find anyone to prescribe HC but trying not to go that route anyway.

[endomad in reply to Sus64]

You can buy hc online but trouble is it stops the adrenals even trying. The Thorne ac made me feel dizzy but I love liquorice iv tried ashwanga ginseng etc I work from home and try to keep stress to a minimum. So 2 years on and very little improvement, it would be nice to have a Dr who actually knew stuff to help but that's never going to happen. Mine suggested HRT and antidepressants lol onwards and upwards x

[Sus64 in reply to endomad]

Good luck.

[richard123 in reply to Sus64]

My endo suggested HRT also.....

Yes happy too if my thyroid function is good but it's not!!

She said one thing at a time, then said add HRT.... ? Forgetful like me 🙄

I've started taking turmeric once a day... seems helpful

[Sus64 in reply to richard123]

I am on HRT also, I tend to throw everything at the problem and then don't know what's working and what's not. Although, progesterone REALLY helps me sleep, I do it at night. I also read in Stop the Thyroid Madness, that too much progesterone had increased Janie's cortisol. That would actually work for me. In the meantime, taking turmeric too, lol, ...and still feeling like crap.

[richard123 in reply to Sus64]

Sounds like me, I tried HRT and it helped but increased the need for More T4 which I don't tolerate well....

I was well before all this now a 44 year old who feels like an unfit 80 year old

[Sus64 in reply to richard123]

Yes, my mother at 80 did better than I am!

[shelbydaws10 in reply to endomad]

Please, anybody on steroids pleae get off them. They will destroy your immune system.

[Kitty1watson in reply to endomad]

Thank you for the notes. It's a minefield!

[shaws Administrator in reply to Kitty1watson]

Blood tests were introduced along with levothyroxine i.e. T4 only. It has to convert to T3. T3 is the only Active Thyroid Hormone required in our millions of T3 receptor cells.

Also, because NDT contains all of the hormones, the blood tests we get will not correlate as they are for levothyroxine alone.

The following doctor only took a blood test for the initial diagnosis and thereafter only prescribed NDT or T3 only and was an Adviser to thyroiduk.org.uk before his untimely death. I shall give you a couple of links which may be helpful. He advised patients to start on a dose and every two weeks increase by 1/4 tablet until symptoms were relieved. If someone felt hyper (fast pulse/temp) dose was reduced to previous one.

web.archive.org/web/2010103...

nebula.wsimg.com/b822d36efe...

web.archive.org/web/2010112...

[Kitty1watson in reply to shaws]

Thank you I will look at the links and try to work out what to do for the best.

[Jazzw in reply to Kitty1watson]

I have a feeling the Thiroyd is doing more than you think it is, actually. Stopping it may be a mistake. I’d be more inclined to stop the levo and add another half grain of Thiroyd!

It’s a tricky one though and I don’t want to deter you from having settled on a course of action. If you can manage with just levo than that would be great but I think you’re never going to persuade that particular doctor that you need more levo...

For what it’s worth, I take 3 grains of NDT and seem to be fairly steady on that. That’s the equivalent of 114mcg of levo and 27mcg of liothyronine.

[Kitty1watson in reply to Jazzw]

Thank you I am going to have to have a good think!

[TSH110 in reply to Kitty1watson]

Thiroyd is supposed to be a good quality NDT and many people find it good, it is unlikely to be a dodgy batch. I take ThyroidS and have found it to be very good

This Link tells you what is in each type of NDT:

stopthethyroidmadness.com/a...

You will not feel well if your freeT3 is not at the higher part of the range. As long as it does not exceed the range you are not in danger of a heart attack, even if TSH is suppressed because this is just a feed backloop that is no longer relevant because you have replaced the hormones your thyroid cannot make/make adequately. Unfortunately there is a huge amount of ingorance even with endocrinologists (who really ought to know better) of hypothyroidism, thyroid hormones and how to interpret blood tests. They appear to have been brain washed.

I feel much better on NDT than I did on levothyroxine. Have you had a check for the DIO2 mutation? You can work it out from 23&me raw data if you have done the kit otherwise you can get a test (NHS does not do it) It can impair T4 to T3 conversion and if you only get levothyroxine not enough will be converted to the active hormone. NDT (which has some T3) or synthetic T3 would help in this case. I wonder if you ever really got optimised on levothyroxine (TSH 0.2 - 0.5, free T4 and free T3 in top third of range) in the first place. My sister and my mother feel/felt well on it. Because they both had thyroid cancer they were given suppressive doses (TSH suppressed) my sister has been on it for over 20 years with no heart trouble whatsoever. The cancer came back after 8 years so that was what killed my mother - not any heart problem. It does not follow that suppressed TSH will cause heart attack, they prove it as do many who have suppressive doses due to a history of thyroid cancer. Despite myTSH being low (I had a very good endo) I never really felt well on Levo perhaps due to the DIO2 gene making me a poor converter.

100mcg Levo is a small dose. I only needed 125 for my TSH to go very low but that is a full replacement dose. Anything less is not.

Addressing any vitamin and mineral deficiencies is important but I found mine resolved once my thyroid meds were correct (1.25 grains of ThyroidS)

Just some thoughts...

[Kitty1watson in reply to TSH110]

Thank you for your thoughts. I will have to consider what I do next. I've not been tested for rt3 or the gene. But the medics I see only seem to focus on TSH and I know that's ridiculous. If I had the money I would do the tests myself and find a decent specialist.

[Aurealis]

If your T4 is low that could result in low T3 also. Endo is wrong though about TSH. Perhaps your biochemistry doesn’t fit the normal range, just like mine doesn’t. I understand why you’re taking NDT but it has made things more complicated to sort out, taking it with Levo. You could take just NDT, but that would be expensive so could be worth trying more T4 first without any NDT, not everyone needs it.

All the best.

[Kitty1watson in reply to Aurealis]

Thank you, I will try stopping the NDT and see what happens at my next test. Thanks so much.

[greygoose]

So, at the moment, you're just taking 100 mcg levo, that right? What your need to do is get retested, six weeks after you started on that dose, getting both FT4 and FT3, and see how well you're converting - just post the results and ranges here, and we'll tell you.

Once you know how well you convert, you can better decide what to do next. BUT for NDT to work, you need to have optimal nutrients. So, you also need to get your vit D, vit B12, folate and ferritin tested. OK?

[Kitty1watson in reply to greygoose]

And, no, sorry, I have been taking NDT on top but have now decided to stop that and just start again with the levo and the GPs. Fingers crossed! Thank you for your time.

[greygoose in reply to Kitty1watson]

Yes, that's what I said, you are now just taking 100 mcg. But, after six weeks, you should do a private test so that you can get FT4 and FT3 tested and see how well you are converting. If you don't convert well, then you will never be well on levo. You see what I mean?

[Kitty1watson in reply to greygoose]

I stopped the Thiroyd the day after my post above, based on the comments left for me here! I thinkm I've gained 3lb in the last few days but maybe I'm paranoid!!! 😣

[greygoose in reply to Kitty1watson]

OK, no need to shout. I haven't read through all the new comments, but I can see no reason to stop the NDT. Stop the levo and increase the NDT, yes.

You might very well be paranoid, it is a hypo symptom. But, on the other hand, you could ver well have gained 3 lb if you're a bad converter and you've stopped all your T3.

[Kitty1watson in reply to greygoose]

I wasn't shouting? THIS WOULD BE SHOUTING. The !!s were for humour as I am starting to feel paranoid about my health. Sorry for any confusion.

[greygoose in reply to Kitty1watson]

OK

[Kitty1watson in reply to greygoose]

I just feel I don't know what else I can do. I eat well, I never had weight problems and can't understand why I'm not getting better. It is so frustrating that the doctors don't seem willing or able to help. I'm sure the POP helped me initially but my weight has crept up again, lots of symptoms have come back and it's getting me down. I'll review everyone's advice and see what I can do.

[greygoose in reply to Kitty1watson]

Yes, it can get very confusing on here, when everybody joins in. The best thing to do is take notes as you go along, but that's a tip for next time.

As I said, I haven't time to go through all the responses you've had, because there are so many of them, but, let's get back to basics...

So, you're just taking 100 mcg levo, now, right?

Are you still taking the POT

Are you still taking the so-called 'Thyroid Support'? Because that is a very bad idea - one of the worst!

Never mind your diet, that is totally irrelevant. Hypo weight-gain is not caused by over-eating or under-exercising, it's caused by low metabolism and low T3, and very often isn't even fat. It's mucin/water retention, and that has nothing to do with diet and exercise.

However, you do need optimal nutrients. And, as I'm always saying, we aren't what we eat, we're what we absorb. And hypos have problems digesting and absorbing nutrients due to low stomach acid.

We always recommend testing the main four - vit D, vit B12, folate, ferritin - because those can affect how your body handles thyroid hormone. But, there are a lot of others to think about once you've dealt with the main four - there's magnesium, for a start. Don't need to test for that, the odds are you're deficient. And, it is a cofactor of vit D3, so if you're taking D3 you definitely need to take magnesium. And, maybe just me, but I've always found it impossible to lose weight if my magnesium is low. Are you taking magnesium? And, then there's zinc. Hypos are usually low in zinc, high in copper. Excess zinc is excreted, so just take some. Low zinc with cause all sorts of problems including muscle pain. So, it's a very good idea to take a little zinc. Selenium. OK to take selenium, which helps with conversion etc., as long as you have a break from time to time, don't take it continuously. I could go on, but I won't at this point.

*After* I started self-medicating, the endo tested me and my T3 was still in range but mid-to-high, despite being heavily over-medicated (which I admitted to the endo

Absolutely no harm in self-medicating and buying NDT on-line, nobody's going to judge you for that! But, why do you say you were 'heavily over-medicated' despite the T3 only being mid to high range? You're not over-medicated until your T3 is well over the top of the range. Most people need it right up the top of the range, or even slightly over, to feel well. But, your endo wouldn't know that! Endos hardly ever know anything. When you're taking NDT, you can expect your TSH to be suppressed and your FT4 to be low. That's 'normal'. It's the FT3 level that is important. And, anyway, you said you felt good. So, why change anything?

I feel as though my body has said, "Great, finally, some thyroid hormone, huzzah!!", but then it had a bit of a regroup and now thinks, "Actually, that's not really doing it for me anymore."

You're partially right, there. But, what it was really thinking was "I need an increase in dose!" So, why didn't you increase your dose? If it was because you were thinking you had too much T4, why not drop the 100 mcg levo and increase the NDT? Or, as someone above suggested, drop the levo and add some T3 to your NDT? And, no, you can't compare taking NDT to exercising. It doesn't work along the same principles at all.

the endo told me, after the last tests mentioned above, to stop the NDT and reduce my T4 to 75mcg, because I had clearly improved so much and didn't need it anymore

You obviously found one of the more idiotic endos, there! What a stupid thing to say! And what a stupid thing to advise you to do! You had improved because you were taking what you were taking. Take it away and you're obviously going to go down-hill again! I would have thought that would have been obvious to anyone, let alone an endo! We're not talking about aspirin, here, we're talking about hormones, and the body has a constant need for hormones! You don't get better and stop taking it. And a suppressed TSH does not mean you are in danger of a heart attack. He really should find another job! But, he's probably a diabetes specialist, anyway. Best not to see him again.

What I really do not understand is why you think you were taking too much NDT, and why you're scared of taking it again. It's nothing to be scared of if you treat it with respect. And don't add the levo. That's like pouring cream over a cream bun! Excessive and unnecessary. Try the NDT again. How long have you been off it? One day? Start back at the same dose, but gradually tail off the levo - 25 mcg every six weeks. But, if you feel you're going hypo doing this, increase the NDT by 1/4 grain. See how you feel when the levo has gone. And, at the same time, work on your nutrients - have you been tested for the main four? If not, get them tested and start supplementing the deficiencies. Take it steady, and see how you go. You'll get there, in the end.

[rosserk in reply to greygoose]

GreyGoose sorry to interrupt but I’m confused above you said ‘drop the levo and add some T3 to your NDT?‘ I thought NDT was T3? How do you add T3? Sorry if that’s a really stupid question?

[greygoose in reply to rosserk]

NDT is T3 plus T4. The OP was taking NDT plus T4 and it would appear that that is too much T4 as she doesn't convert well. If increasing the NDT isn't enough T3 for her, then she should add in some extra T3, not extra T4.

[rosserk in reply to greygoose]

So can you get just T3? Sorry I’m a bit dim

[greygoose in reply to rosserk]

Yes, there are many brands of just T3 : Cytomel, Cynomel, tiromel, etc.

[rosserk in reply to greygoose]

Agh thank you now I see! I didn’t know I thought NDT was just T3 and wondered why some people stopped taking Levo when adding NDT I thought they were abandoning T4 and going on T3 alone. Really glad I saw your post otherwise I’d have got myself in a right mess if I switched to NDT. Can I ask one more question apologies to author for hyjaking her post. Will doctors prescribe Cytomel- Cynomel if a patient is a poor converter? I know they don’t prescribe NDT.

[greygoose in reply to rosserk]

That is a very thorny question. I take it you're in the UK? Very difficult to get it prescribed in the UK because it's so expensive. And, in the rest of the world, where it's cheap, it depends if the doctor knows what it is! A lot of them don't. And, a lot of doctors are at all interested in the FT3 level, or conversion or T3 in general. So, it's usually a fight wherever you are. But, you can buy it on-line if you can find a source. And, for that, you'd have to post your own question, asking if people can PM you their trusted sources.

[rosserk in reply to greygoose]

Thanks GreyGoose if I get to that stage I will do as you suggest. Kindest regards 😜

[greygoose in reply to rosserk]

You're welcome.

[Kitty1watson]

Thank you, the GP refuses to test T3. It was only the endo that tested T3 and it was mid-high in range (with low T4 and suppressed TSH), hence his advice to reduce the T4. My T4 has always been low but when I had that last test, with the higher T3, it was the first time in years I had felt more like myself. I will ask again about the other tests - my GP has told me before that they can tick the boxes, but the lab just refuses to do the tests! I was astonished but there was nothing I could do. That included T3, as they said it doesn't matter what the T3 level is, it is only TSH and T4 that matter.

[endomad in reply to Kitty1watson]

They absolutely can test T3 vits b12 & D, folate, iron and full female hormones, I have mine done twice a year as I caused a stink. The truth is they don't want to as it comes out the gp's budget! I also have my cortisol and shbg done. Don't take no for an answer, don't be fobbed off (I was for 6 years after thyroid removed) write a letter to go on your medical notes saying you need these tests to understand why you are still hypo, all need to be optimal for your meds to work and that you want your Dr to work with you. Once it's on your medical notes it is harder for him to refuse. The lab once refused to do my T3 till I got on the phone and told them to retest the sample, they are not medically trained or my Dr and how dare they 2nd guess instructions. I took the names of the lab tester and his boss. It is all a nonsense but you either have to get tough, go private or go it alone and self medicate. I was polite for years and got fobbed off, I am now a complete b*stard but get the tests I want; the endo I want, I got T3 prescribed, I have taken one endo to ombudsman. I would also drop into the conversation that you are a solicitor

I'm so sorry to hear your doggy not well they are our babies. Xx

[Kitty1watson in reply to endomad]

Thank you. I think I will do as you suggest and write in asking for more tests to be done. It feels much harder to be bullish when I feel like I am not knowledgeable enough! I usually end up having to accept what they say because I have no frame of reference. But yes I was so amazed that the lab could just ignore the form. It's happened twice now. The gp asked for T3, lab refused.

And thank you for your mention of our pooch. She's very precious to us!

[TSH110 in reply to Kitty1watson]

They are wrong!

[rosserk in reply to Kitty1watson]

Exactly the same happens at my NHS lab. Doctor ticks boxes lab ignores. Wonder if we could complain the the NHS? Do the lab have the right to over rule doctor are they qualified practitioners?

[fibrolinda]

If you can manage it maybe get test via thyroid UK with medichecks or blue horizon... (under £100) At least then you will get a clear picture of what is going on and the best way to proceed 😊

[Kitty1watson]

Thank you. As soon as we can afford it I will do this, thank you. The dog needs xrays first as I think her hip replacement has failed (or at least not doing what it should be) and we had to stop her insurance as it was so expensive. She has to come first at the moment and we can't afford both!! That may sound crazy to anyone who's not a dog person but she's family and in more pain than me!! 🙈

[Treepie in reply to Kitty1watson]

I thought being a solicitor was one of the most desirable and lucrative of employments for which I wished I had had the education and family to enable me to become one but clearly not.You are right many dog owners are on a scale of craziness and often appear to be illiterate or ignorant : the only explanation I can think of for them routinely ignoring signs to keep them on leads .( Where I live this has nearly been terminal for some dogs as some low life has been setting snares for badgers or foxes and dogs have been trapped around the neck and were being strangled when found). Dogs used to be kept outside in kennels when I was young. Now they have been turned into little children.

I wish you well with your illness but you need to put yourself before your dog.

[TSH110 in reply to Treepie]

Not whippets they have always been the best hot water bottles ever and where one puts ones dog is a personal choice I believe. I like all six of mine in the bed. It is one way to combat the coldness of hypothyroidism!

[Kitty1watson in reply to Treepie]

Thank you for your somewhat sweeping judgements on solicitors' salaries, dog owners and dogs. I do not intend to respond at length, as it's not particularly relevant, save to say that I work part-time and have a number of financial commitments which generally take care of my "lucrative" pay packet before I can even think about paying out for medical tests. That mortgage is a right pain. Treating a dog like a living, feeling creature is not something to sneer at. ✌

[TSH110 in reply to Kitty1watson]

Just get a free T3 test only £29

Hope your doggie is ok I really get what you say being a six dog person 🐾🐾😊🐾🐾👍🏽🐾🐾

[Kitty1watson in reply to TSH110]

Thank you! X

[Greybeard]

I'm not sure if it has been mentioned but, you need to look at what is in the "thyroid support" you say you are taking, many contain iodine that can in fact be counter productive to thyroid function. If you enter iodine into the search box you will be able to read about the problems it can cause.

[Ginny52 in reply to Greybeard]

I was interested in your comment- partly because I’d found that I can use iodine to raise tsh to the satisfaction of my doctors, which saves me a lot of avoidable grief, when it would otherwise be suppressed. Can you suggest any more details I could read?

[Kitty1watson in reply to Ginny52]

I love this subterfuge!

[Ginny52 in reply to Kitty1watson]

Works for me! Seeing suppressed tsh seems to really get them at it, and as my biochemistry on paper is all that’s apparently interesting about me in this day and age, I reckon making it look like they want it to amounts to satisfaction all round. Nobody is ever going to ask me anything time- consuming like how do you feel!

[Ginny52 in reply to Ginny52]

Discovered this by accident- unhelpful endocrinologist then wrote to my gp saying it was the spontaneous recovery he always foretold! I realised at this point I was on my own.

[Kitty1watson in reply to Ginny52]

Oh my goodness! So that endo is walking around thinking what a good job they did!

[Ginny52 in reply to Kitty1watson]

Only with his crystal ball, since I wasted a year and a half going to see him, and he did nothing at all. Between ourselves, that’s exactly what he would think anyway.

[Aurealis]

Some would just try a bit more Levo and see if it helps .... The tests are supposed to be used to check what your set point /sweet spot is once you’re feeling well. That’s the only use for them, especially if you’re someone who always gets odd results. It’s hard for GP/ endo to argue once you feel well. Don’t assume a linear relationship between dose and test levels - amazingly, it doesn’t work like that! You may be able to take more Levo, feel well on it, and test results be little different to now. And once you feel well it’s easier to stand your ground.

Whoops, it’s a shame you lost that luggage with your Levo inside

[Kitty1watson in reply to Aurealis]

I've already played the "lost tablets" card before.... 😕

[Aurealis in reply to Kitty1watson]

Well, the strangest things happen sometimes. A bad batch perhaps? 😂😉👍

[roxanaleah]

Hello, Kitty (I just couldn't resist!)

I'm sorry that I cannot provide you with a nice, tidy, link, but I strongly recommend that you read the pdf e-book by Dr. Alan Christianson called "Healing Hashimoto's: A Savvy Patient's Guide", specifically about 'dumping', which I believe is found on page 30.

I have read a considerable volume of data regarding hypothyroidism/Hashimoto's and I have never read about the concept of "dumping" except by Dr. Christianson.

[Kitty1watson in reply to roxanaleah]

Thank you i will look. X

p.s. I had to refrain from writing "Hi Jack" at work the other day!

[Skylane2]

It is possible you aren’t converting your t3 to t4.? Have you tried taking Cytomel? ( t3)

[Kitty1watson in reply to Skylane2]

I don't know. My T3 result didn't seem bad at all so I doubt the gp will even allow a short trial.

[Skylane2 in reply to Kitty1watson]

Good to know. I’m hoping you get the meds regulated soon .are you able to get a RX for Naturthrid? It comes from a cow’s thyroid gland. It’s not too easy to get your doctor to prescribe in th US because it can’t be regulated but I know people who do really well on it

[Skylane2 in reply to Skylane2]

Naturethroid

[Kitty1watson in reply to Skylane2]

I bought Thiroyd online but it didn't do much even though i was taking a lot. Another post of mine has overtaken this one, and to cut a long story short, my GP has said the endo is completely wrong, I probably have a pituitary issue and has increased my T4 to 150mcg. I'm in the UK and they will not prescribe NDT full stop.

[phoenix23002]

It is not a question of the body adjusting to a medication but, in the case of thyroid meds, it may be a question of the T 3 (the active thyroid hormone) circulating in the blood/body but not getting into the cells. So, we can be taking plenty of thyroid hormone but it is like we aren't taking anything. This happens with 'pooling' and with Reverse T 3. Here are a few links explaining the conditions and how to approach treating the conditions.

stopthethyroidmadness.com/p...

stopthethyroidmadness.com/r...

As always, it is imperative that you ck your B 12, D 3, iron and saliva cortisol. Again, being within range is NOT always optimal. It is never a waste of time and energy to track your body temps and heart rate, thyroid doses and how you are feeling each day. 3 pm is a good time to take body temps.... that is when they should be at their highest. Many folks have to work on their vitamin/iron levels while they tweak their thyroid dosage. Be patient with yourself and be open-minded. We didn't get ill overnite and we won't get well overnite.

[Kitty1watson in reply to phoenix23002]

Thank you. I will look into all this.

[vdevaney021357]

What are you eating? Thyroid disease is caused by food, wheat barley and rye have gluten that rots in your stomach causing toxic gases that is heart burn or reflux. Burns up your thyroid gland and your hormones go crazy. Then digestive issues cause inflammation as Ibs, chrons, celiacs, and damages the immune system so it attacks healthy tissues/organs like ovaries, heart, lungs. Go off Gluten! No sugar or refined foods. no more fast food or mixes that are filled with preservatives, MSG, lactose, or meat that has eaten hay or grains, grass fed only. Lots of lemons and oranges, limes etc. Look up William Anthony Thyroid Diet Spiritual Author USA. I live in Charleston SC USA. I had very heavy periods, put on the pill to gave me Estrogen that my ovaries were damaged by PCOS witch is known to be caused by gluten. then i got thyroid graves disease or hyperthyroid uncontrollable high blood pressure with panic attacks from hell so they gave me radioactive iodine pill to remove the gland. Now I am hypothyroid and the medicine will not absorb enough of it called malabsorption. So they are going increase dosage of Armor Thyroid with T3 and T4s it is a pig thyroid hormone. Overcompensate for malabsorption due to eating gluten now. It is in everything!

No Iodine in SC

Vicki

[Kitty1watson in reply to vdevaney021357]

Thank you for this. I've been gluten free since 2005, as I am allergic to it. It gives me ulcers. Also allergic to soya. I don't eat meat, occasionally fish, never fast food. The last time I set foot in a McDonalds was 2002 and that was a total one off. 😣 I rarely have dairy now and have oat or almond milk and vegan cheese instead of the real stuff.

I rarely drink alcohol and we cook from scratch. No ready meals ever.

I do have an autoimmune diagnosis and because of that I cut out nightshade veggies (peppers, ptatoes, tomatoes, aubergine etc). They definitely make my ribs and joints ache. I can probably reduce sugar a little but generally we eat really well. It's very frustrating to be so good and yet still overweight. So unjust.

I'm starting a probiotic to see if that helps. I'll check the iodine.

My husband had the same radioactive treatment and is now hypothyroid too.

[Kitty1watson]

Can anyone PM me with reputable places to buy T3? And/or NDT? It seems that suppliers change along with prices and it's hard to keep up. Many thanks.