I now seem to have no reliable hyper/hypo signs to guide my treatment. Any ideas?

[puncturedbicycle]

Urgh, apologies if you keep reading my saddo posts on feeling ill. Every time I have a whinge someone seems to make a helpful suggestion.

Since Oct I haven't felt well and I seem to have a mixture of hypo and hyper symptoms. My last tests showed my t3 to be in the top third of the range, suppressed tsh. My guts are fine (no diarrhoea, which I had last time my test results showed me to be a bit hyper). My resting pulse is the same as always, temp the same it has been since I've been on enough meds, but any stimulation - esp emotional - sends my heart hammering like mad.

At my appt last week my gp seemed to think that my meds were a little high and that this means I'm producing too much adrenaline, so my resting pulse may be fine but when something makes me excited, too much adrenaline is produced.

At that stage I would've taken any advice because I felt so ill. I reduced my meds as gp requested and I do feel a bit better (immediately it was like one of the three weights on my head was lifted), but I'm far from well.

My iron and b12 were low and I'm supplementing like crazy. Folate was at the top of the range. I'm back on a gf diet. Ages ago I was diagnosed with adrenal issues and have been working to support that but I've no idea if it's working (I haven't been retested).

I seem to need less medication than I used to. I was on 125mcg t4 and 25 t3 when I felt well and at the time of my last tests I was on 75 t4 and 37.5 t3. I've been on the new dose (50/75 t4 and 25 t3) for just over a week. I still have no symptoms of my dose falling below an acceptable level. I have begun to see some oedema creeping on but this had begun before the change in dose (and it could be period-related).

I've lost confidence in what used to be my ironclad hyper/hypo symptoms (over/underactive guts and pulse) so I can't tell if I'm on the right dose of meds or adjust my dosage with any certainty. I used to feel ill if I reduced my t4 but now it doesn't seem to bother me.

I'm considering trying ndt - ? But I know that isn't a sure thing. But first is it worth giving t3 a try - ?

Sorry this is all over the place. I'm just trying to plot my next move. I'm desperate to feel well!

[Aurealis]

Sorry you're having such problems. I do recognise the adrenaline reaction- I had this quite a bit during the first year or so of T3, but it gradually reduced, though think it may be a hyper symptom as you say. I don't know if you get the same hyper/hypo symptoms each time? I don't, especially on T4. As you feel better on reducing T4, that's promising and levels will continue to fall due to long half life, so if you continue you may feel increasingly better. I always feel it takes longer to stabilise when alternating dose day to day, but it will gradually stabilise. My instinct is that you might need to keep things stable as I always think a mixture of symptoms happens when I've made lots of changes close together, but of course some symptoms are common to hypo and hyper - but if you keep dose the same you will either develop more symptoms to guide you, or start to feel better. Things that help me are regular meals and exercise (when I'm well enough). Two things you might try changing, if you feel you have to make changes, are brand and timing of meds. You may be able to get surprising improvements just by adjusting timings. Good luck!

[puncturedbicycle in reply to Aurealis]

Hi Aurealis. I'm so glad you said that. No, I don't seem to get the same symptoms, which is what makes it all so confusing.

The first time I went a little hyper I had the diarrhoea (not properly but sort of borderline) and some adrenaline issue where it was very hard to not say the first thing that came into my head even if it was something I shouldn't be saying. When I told the doc she said 'Yes, it can make you aggressive' and I had to admit that that was not too far from what was happening. I don't remember having any heart issues (hard or fast pulse) and I wasn't tired at all, I had a lot of stamina and needed maybe a bit less sleep than normal.

I was so confused when I became progressively more exhausted but had no bowel issues at all, pulse stayed the same, no feeling hot, no tremor, nothing that you'd expect.

I'm taking the gp's suggestion with a grain of salt, as in, I will try it but if it feels wrong I'll go back to my regular dose, but there was no point in arguing as I felt awful and I've had no luck at all trying to increase any meds since Oct. So there's no argument if you have no better ideas.

In the past I've had so much free-floating anxiety when I tried to decrease t4 but this time no anxiety, so I wonder if in a few weeks it might not be a bad idea to see if I feel better on even less t4, and maybe make up the difference with a little more t3. I think things may have become muddled with my iron and b12 plummeting after I stopped supplementing, so once I'm back on track it might be worth looking at t3 alone as the way forward. The oedema is a very unhappy development but I'm hoping it is time-of-the-month stuff. If not, the good thing is that when something works it does come off all at once so fingers crossed.

The brand change is a good idea if I do continue on t4. I'm so pleased I read here to try to keep the brand the same, and I didn't feel well on Actavis so I changed to Mercury Pharma and have been on that ever since. Now I know I was on far too little levo to make a difference when I was on the Actavis, so it could be worth a try.

Thanks so much for your encouraging message. It has really helped me think things through. xx

[Aurealis in reply to puncturedbicycle]

Are you taking MP 50mcg - MP 25mcg are better (for me anyway). 25s are same as old Eltroxin, but 50 are not.

[puncturedbicycle in reply to Aurealis]

Taking 50s.

[Aurealis in reply to puncturedbicycle]

Have sent you a pm

[LouiseRoberts]

I wanted to focus in on 2 points....

Have you had any sort of adrenal testing....?

How are you supplementing B12..?

L

x

[puncturedbicycle in reply to LouiseRoberts]

Hi Louise. Yes, ages ago I was diagnosed with adrenal issues and have been working to support that but I've no idea if it's working (I haven't been retested). I was taking dhea and an adrenal support supplement recommended by my private doc and at one stage bioidentical hormones (I was/am? oestrogen-dominant; I'm 46). I tried the CT3M but now I'm on one morning dose of t3 which for now seems to suit better.

I'm on b12 patches, I take a b supplement with 250mcg b12 and when I remember I pop a few sublinguals. x

[LouiseRoberts in reply to puncturedbicycle]

Just wondering if the palps are something to do with the adrenal meds - not my forte though....

Also not up on the patches for B12, I know a lot of people swear by the drops and other people have to have injections....

Sorry, not a lot of help.. I often seem to ask more questions than I answer! LOL! xx

[puncturedbicycle in reply to LouiseRoberts]

Not on the adrenal support anymore. I found the (very reputable, highly recommended, private) doctor was giving me more than three times the recommended maximum dose of b6, which seemed to be in most of the supplements.

When I first went on the dhea and testosterone/progesterone I did get palps and reduced them accordingly, but I was also taking a higher dose of levo (possibly a case of changing too much too soon) and in any case it went away and none of it seemed to help so I didn't bother going through the complicated process of buying it from abroad anymore.

Don't worry - I always ask more questions than I'm able to find the answers to. It's the human condition.

Am in email communication with a b12 support group who are giving me a lot of good info. xx

[LouiseRoberts in reply to puncturedbicycle]

Glad to hear you are getting B12 support.

I'm aware of a couple of people who are sensitive to B vits - one of the Admin team for a start!

I hope you find some answers!

L

x

[edysia2 in reply to puncturedbicycle]

Hello Puncturedbicycle which group is that ? If I may ask, please. I might need some advice. Thank you . Happy Easter Holiday to you and all fellows sufferers. e x

[Jackie]

Hi Personally I would not take T3 if FT3 high. ideally it should be slightly under range. it really is true that if too high it does effect the heart. Not just told to me by all my consultants, some good, but I can tell myself. Is your T4 in top third?I would also have another blood test, TSH, T4 and FT3, I believe they should be done every three months in a normal person. The gP will not because of costs. That is why I use Blue Horizon, but do n ot go through a private hospital, expensive! I thin k it could well all be down to too high FT3, especially if your T4 is also too high, as some is always converted.

It does not sound as if you are seeing an endo, I would say that is the top priority. However, research carefully yourself first Look at their names on the private hospitals, often more info their. CV on the WEB., then phone their secs and fish, also ask about treatment. Listener most important, I think. Only then ask for a referral.

I hope this helps,

Jackie

[Aurealis in reply to Jackie]

Jackie, I haven't been advised to keep T3 below the range, do you think this is individual advice to you, taking into account your other health problems ? Agree an Endo can be helpful but it sounds as if pb's GP is pretty clued up - one advantage of a good GP is their expertise in a range of conditions, so good support when you're managing more than one condition

[Jackie in reply to Aurealis]

Hi Aurealis,

While it is true that my heart is very bad. I never automatically accept what any doc ( even the best) says.. One of my problems, minor is AF, when my FT3 is even just at the top of range, my AF is terrible.This is definitely not me.,but lots of people. I am so keen on T3 as I think it is a miracle drug, and take it and armour ( endo)But am very careful with plenty of tests. Normal FT3 for me is below range, ,liver.This is why so many consultants etc are against T3 and armour etc. I disagree, just needs care, fortunately so does my endo.The Queen Elizabeth in Birmingham, every doc, including Prof Jayne , president of endos, is totally against anything to raise the FT3. i just know I feel terrible if mine too low. have lots of arguments about it as I have to go in there a lot. They ignore me when I say it is an assault to do thyroid tests,against my wishes. it is!

Also the reason T4 should not be too high. Even when not converting, .like me, you still convert a little T4 to FT3.

Best wishes,

Jackie

[Aurealis in reply to Jackie]

I see, thanks for explaining. I suppose that's one of the advantages of T4 (if you tolerate it) over NDT, that you can take T4 without taking in more T3, so you have full control over the balance between T3 and T4.

[Jackie in reply to Aurealis]

Hi Yes, very true Unfortunately not enough fort a lot of us, where the problem starts!

Jackie

[puncturedbicycle in reply to Jackie]

Jackie, 'My last tests showed my t3 to be in the top third of the range, suppressed tsh.' My t4 is low (in line with the usual results of t3/t4 combo) as is my tsh. I don't know how I'd get my t4 high in the range without my t3 going over. I was just tested in Feb.

[Jackie in reply to puncturedbicycle]

Hi I see the problem.. The FT3 is lowering the TSH, it always does. I have to ignore my TSH, as was very low to start with. This is common with Liver disease, unfortunately except my Endo doc seem to have missed this! Have you had LFT`s done, liver function, it effects all bloods. ? Also what happens if you have your T4 just a little higher in the top third.? Are you sure your b12 is high in range, iron/ferritin clearly in range and being absorbed properly, ie transference %, most important?Also annual diabetic tests.

If none of these apply ,I would seriously start a hunt for an Endo. if the bloods are right for you, you should feel fine and mostly stable..it may also be worth having a 24 hour urine collection for the pituitary gland, low TSH Vit D certainly effects the thyroid and make sure your calcium is not over range. if it is no D and more tests!

Best wishes,

Jackie

[puncturedbicycle in reply to Jackie]

All liver function tests and diabetes tests were fine when last tested though not tested recently. I'm afraid I don't think I can get my t4 any higher because as you suggested it would put my t3 above the range.

My b12 is within range, though it fell from above range (when supplementing) to the lower third of the range when I stopped supplementing for a month. This indicates to me that I'm losing/not absorbing a lot of b12.

Iron was p*** poor as well - 19 (range something like 10-350) even though I've been taking iron for months if not years and only stopped 3-4 weeks before the blood test. I'm supplementing now but I'm on the gentle iron (100mg) because I can't be dealing with nausea.

D wasn't bad but could be better so I'm on 2000iu. I was severely deficient last year or year before, so I try to keep on top of it. Calcium not tested on this occasion but has always been normal when tested. xx

[Jackie in reply to puncturedbicycle]

Have you been tested for an absorption problem? Common with thyroid, autoimmune.Simple test for Pancreatic enzymes called Faecal Elastase, results idiot proof, a specific stool test, treatment replacement enzymes, Creon, 20 mins before food. A.so available H and B.

Jackie

[edysia2 in reply to Jackie]

With Blue Horizon, do you do finger prick test Jackie? Or you arrange your blood to be drawn and send to BH?

I prefer blood to be drawn for test but I find reversed t3 test from privatebloodtests .com( one of blue horizon websites) too expensive, rt3 costs £161 ( drawn at any spire hospital) . Thanks for advise Jackie. E xx

[Jackie in reply to edysia2]

Hi To use any private hospitals is vastly expensive, even just for Blue Horizon. B.H finger prick, so called, is a phial, so when I investigated well proven ie results as a venous blood. However, I have weekly bloods at my GP`s, for other things. She allows me to have my syringe filled for B.H, , I label it first, then post.. Usually if having venous blood done for other things, no problem, anywhere but ask first!. I have sticky blood so a teaspoonful a major problem for a phial.this is £10 cheaper than the finger prick. Both are fine, nothing like what we would call a finger prick. Same Lab as in house, in most private hospitals, so well known etc.In fact I use them for my vit D too, same syringe. It is dearer but more accurate than the NHS one , which I can have free!

Do not do bloods at the end of the week because of terrible post. I only send them Mon- Thurs of then they could be inaccurate.

If you DIY, drink a glass of water 30 mins before, make sure you are well hydrated and run finger under warm/.hot water.

I use them a lot as my GP "not allowed" to do FT3, therefore I have the 3 thyroid tests done together by them, worth paying, although I do begrudge it!

Best wishes,

Jackie

[edysia2 in reply to Jackie]

Thank you Jackie. I will explore further. Best wishes. E x

[HarryE]

If your iron and b12 have improved, maybe you don't need as much medication as your body is able to use your thyroid hormones better?

[Jackie in reply to HarryE]

Hi very true, also helps the heart and kidneys too.

Jackie

[puncturedbicycle in reply to HarryE]

Thanks HarryE. The chronology (which is not clear in my post) doesn't bear this out. I was on much higher doses of meds when on more supplements (better levels), then kept reducing meds, then went off supplements for a month or so before my blood test (iron and b12 fell like a stone) and still had to continue to reduce meds. And despite everything looking good on paper, now I feel properly ill. I went from feeling great on higher doses to feeling awful on lower doses but the bloods are not very different. It's a mystery.

The only thing I can think of is that perhaps the t4 has fallen right down and maybe more t4 will help (I must compare last year's t4 results to my recent results). This theory would have rung true to me last year, when I had awful anxiety whenever I reduced t4 but this no longer seems to be the case. In fact, I now feel a bit better having reduced my t4 but who knows if that's because my t3 had gone too high or if it's because t4 just doesn't suit anymore? My head feels like it will explode trying to figure it out.

[Jackie in reply to puncturedbicycle]

Just saw this. iron and B12 treatment and vit D normally for life, with retests.

Jackie

[puncturedbicycle in reply to Jackie]

Yes Jackie, I know (which is why I've been supplementing) but as I'm sure you know, if you take supplements before the test the result is not reliable, thus the gap of 3-4 weeks before blood draw.

If I'd continued to take b12 for example, my results would continue to be above range and I'd have no idea that I can't seem to hold onto any b12. I'm thinking an active b12 test might be on the cards, and/or antiparietal antibodies. x

[Jackie in reply to puncturedbicycle]

Hi I see. I know the only thing my Endo recommends is the thyroid drugs not before bloods. In fact for PTH nuclear scan, it is thyroid drugs an d various other non thyroid related drugs. You seem to know your body well, but I would consider the help of an Endo, this is all Endo and so much mode.If you are staying on a certain dose of sayB12, then no need lo reduce it, test to show if you need more or less.

best wishes,

Jackie

[puncturedbicycle in reply to Jackie]

I've been through two endos so far - one nhs and one private - and neither was a great deal of help, so I'm looking into another (private natch).

Private doc was very fast and loose with meds to the degree that I was able to get well but I worried that enough care was not taken. Recently realised this doc was giving me more than three times the maximum dose of b6 (which can cause permanent damage). Nhs endo was not bad in the scheme of things but slow to change meds and 90% guided by tests, all of which looked great even when I still felt ill.

Re b12, the thing about supplementing is that levels will always be above the range, but this doesn't tell you squat about how you're using it.

When I was first tested even the blood test results printout said that no supplementing was assumed (so even the docs and labs know you shouldn't supplement at time of testing) but of course I was not told I'd be tested so my levels were well above the range. A year later I requested the test myself, stopped supplementing 3-4 wks before the blood draw and the levels fell right down (still 'normal' of course so no point asking the gp for help).

B12 deficiency can be diagnosed through testing, but cannot be excluded with normal results. For that you need active b12 (I believe this can still be problematic depending on how long you stop supplementing, which can make you ill) and/or ab tests. It's a very complex subject to wrap my head around. My cerebral resources are stretched just making a cup of tea these days.

[HarryE in reply to puncturedbicycle]

Oh dear, ive run out of helpful ideas, but sorry you feel so poorly

[puncturedbicycle in reply to HarryE]

Omg, I feel like such a sad sack. Whenever I get stuck and post about it, a lot of people give me great ideas and I'm so frustrated I may be responsible for bringing a pall over the forum, shooting down everyone's suggestions. But I do really appreciate people trying to help, and it does get me further along.

When I get stuck like this I know I can be a bit of a know-all ('I tried that already!') but I don't mean to be. I'm just frustrated.

I do feel better than I did 1-2 weeks ago - getting up earlier, not so completely shattered - so maybe I'm going in the right direction.

I used to suffer from depression and I was treated very aggressively by two different wonderful doctors, to no avail. One of the psychs told me not to give up, that in the end a lot of people just feel better for no apparent reason, so despite struggling and feeling like you get nowhere, you may eventually just spontaneously improve, and that's exactly what happened. So the same thing may happen with my thyroid. I'm putting everything into place so when the time is right, whatever I try has the best chance to help. I'm luckier than a lot of other people, so when I despair it is usually short-lived.

[HarryE in reply to puncturedbicycle]

Oh sweetie, don't be sad

You're not casting a pall at all. You offer lots of advice to others too, and all these answers might help someone else too. Just because you've not got the answer yet doesn't mean it's not out there waiting for you xx

[puncturedbicycle]

Interesting. I found I was recently able to consume more caffeine with little effect whereas I used to be very sensitive; this only became apparent because I became so exhausted that I drank more tea every day just to stay upright. It didn't cause the usual anxiety/shaking/irritability that used to be a problem with even low doses.

I certainly felt sensitised to own-made stimulants, as any challenging situation would incapacitate me with an instant squirt of adrenaline. The simplest things would overwhelm me.

I didn't feel anxious as such - this is for me more of a hypo symptom - but my usual low-level agoraphobia did escalate out of control due to the problem above. I just couldn't challenge myself.

So I think I understand what you're saying - that it's the nature of the treatment, not the amount of medicine? - but I do notice a difference when my levels are high as opposed to low. On higher doses of meds the aggression/overstimulation is not constant but it is hairtrigger.

I have experienced other permutations of hyper incl the one where I felt constantly ready for action, needed little sleep, was not anxious but perhaps hypervigilant (plus some other symptoms, diarrhoea being one), and this is not as dramatic, but the hairtrigger aggression/overstimulation feels on the same spectrum, and I don't experience that when on lower doses of meds. The difference between doses at the higher end are subtle but they're there.

Do you propose any corrective approach to address the hammering heart/fight-or-flight reaction? Less caffeine I would assume (done), but are you suggesting that the meds were okay at the earlier levels? I am feeling better on less meds 10 days later. Just trying to get my head around the implications of what you're saying.

[Jackie]

Hi Things lie AF normally are occasional for many hears, still need treating,or avoiding.They only become permanent. after many years, even if treated.It is wel known by Cardios a\nd Endos that thyroid disease can cause early on set of A.F.

Jackie

[puncturedbicycle]

Thanks for that Sandy12. I don't know if we got our wires crossed but this is on a decreasing dose, not an increasing dose - ? Since Oct I have reduced from 125 t3 and 25 t3 to 75/50 t4 and 25 t3. My test results never seem to reflect that the dose is reducing. My tsh is always suppressed and t3 is always high in range.

I'm not sure how to respond to the latter part of your reply. Maybe I've got the wrong end of the stick because there is no question of perfectionism here, I can't emphasise enough how unwell I feel. I was as unwell two weeks ago as I have been since dx, when, and this may sound melodramatic, I felt like I was dying.

[Hidden]

Hi. I was wondering how things are going for you now, puncturedbicycle? Are things any better?