Underactive thyroid levels going up!

[Ninablue]

Hi I have been on thyroxine for about 4/5 months now, started at 50mg and now on 100mg. Each time i have a blood test my levels have gone up and its doing this every 6 weeks. Im told each time to come back for a blood test by my Dr but i can feel when my levels have changed so go along for the blood text and lo and behold my levels have gone up again.

Why is this happening when Im on thyroxine? Is it because they havent got the dosage right yet? Im feeling so poorly aching joints, hangover feeling, bad tummy every mng so i have to sit on the toilet for what seems like hours :( I have also started to get a bit of vertigo. Ive checked and this is another side effect of thyroid?

But my Dr was having none of it. He says that its not and i should only be feeling tired and a little achey? What? I don;t know what to do now....

My levels are now T4 - 14 TSH -5.3

Thanks

This website may be helpful to you (its the website of the British Thyroid Foundation)

www.btf-thyroid.org

At those levels I would not be able to get out of bed. Leonie is absolutely right - your TSH should be around 1 and your FT4 should be in the top third of the reference range.

They started treating me when I had a TSH of 1.6 and an FT4 of 13. Treatment has changed my life.

D

So what should i do? Go private?

Ok thanks for your help. Will start looking into some private help, will have a look now x

Hiya, did you get that book 'understanding your thyroid' from boots/sainsbos? It's fab for showing GP the section where it says your tsh will prob be 1 or under and t4 top of range
Private is expensive
Won't the GP prescribe more? I just order double on dubious grounds of having lost some, the self medicate an increase, go back in 6 weeks for bloods, tell GP and repeat til I feel better. Don't take any shit, me, :)
Or try a new GP?

Anyway, if just diagnosed you also need to get all your vitamin deficiencies sorted or the meds don't work properly. Vit d, ferritin, b12, possibly also folates are prob low and need supplementing with high doses - GP should check

Also, do you take meds on empty stomach and avoid food for an hour (also take 4 hours apart from iron)

It takes time to get better but also it takes knowledge. If your GP doesn't have it, you can teach them, or change. Of course go private if ypu can afford it but a change of GP might be cheaper

When in the UK, I used to just fill in a slip for a repeat and put in the box in the surgery. When I was given 75mcg of thyroxin, one of the gp's told me on no account could I increase it myself.......took 100mcg and, very briefly, had sufficient energy to get angry, so went back to see another doctor. She let me increase every so often as long as I didn't totally suppress my tsh, although it's very very low.

Currently I'm on 175mcg thyroxin and 25 mg of T3 per day. Still feel like shit though, can't lose weight, and have been referred to an obesity clinic.

Endocrinologist says that they can't do any more with thyroid drugs. I do wonder, if it's something like high levels of cortisol interfering with my hormone function - but this has never ever been tested.

Ninablue, i hada phase about 2-3 yrs in, following eventual dx, which took bloody years for me, that my levels kept changing and I needed thyroxine dosage increased regularly, then it did settle down. I put this down to 'active antibody'action ie if you have Hashimoto's, as i do (the autoimmune type of underactive thyroid) then you will be producing antibodies whichare destroying your thyroid, hence the underfunction. Eventually this will stop, or sometimes it stabilises for a bit and then resumes. Like others, i felt rubbish till my tsh level was very low, around 1. I had a good year or two just there, lost weight, lots of energy, not so great now again, but other autoimmune things i have are in flare up, so who knows. One nice GP did tell me (sadly she's now retired, though i'm not too unlucky with the bunch who are left!!) the longer you've been underactive and needed thyroxine, the longer it seems to take for you to recover - that makes sense in that all your tissues need to be perfused with thyroxine in adequate amounts, which is why there are so many symptoms with this dreadful, shitty, misunderstood condition. HTH. Best wishes to you all. It truly is dreadful having to fight for the right treatment.

Hi, thanks for the messages -~Merci, no i still havent bought a book. But I am gng to the supermarlet this mng to get bits for the kids uniforms so im gng to pick up that book. I started to feel better with the last increase so didnt bother buying it but i will. I started self medicating and increased my dosage from 75 to 100 last week when i was feeling so ill and then the Dr increased it. My mum also suffers from underactive Thyroid and her levels are terrible T4 is somethong like 50 :( and she has just gone back for another blood test she is on 75mg ive told her to increase herself but shes terrified of self medicating. This mng I have awful aching joints to the point where they feel like they have been pulled from there sockets, is that normal? Im gng to ask for another blood test to get vitamins checked i need to get fighting otherwise im gng to feel like this all the time! Basket, it is awful that the Dr just doesnt understand? Leonie was the one who made me feel better as you almost feel that you are going slowly mad with this :(

oh and i take my tablets in the mng and wait an hour for a coffee, i also take iron vitamins in the afternoon and i can't take them on an empty stomach!

Your tsh is still crap so that's why you feel bad, essentially. I felt terrible still at 2.5, so keep on going!
I wouldn't be at all surprised to hear there are vit deficiencies going on tho. Your body stops working properly eg you can't change sunshine into vit d, because you can't do that, your body stores bad cholesterol ready for when you can synthesise vit d. Same story with other vitamins. You can eat as much iron rich food as you like but if your body's not working properly it can't get the vitamins. That can cause real pain, tiredness, muscle aches and bone pain.
If things continue once vitamins sorted and tsh is low, then look at your t3 and reverse t3 to see what's going on there. That's a way off though. Probably once tsh is sorted and vitamins increased you'll feel a lot better
Book is good. You can always bash GP over the head with it ;)

Sorry about your mum, too. It's hard for the older generation, they have more trust in their doctor. I have 2 GPs and one couldn't give a toss. When I told him I still needed 2 hour sleeps in the afternoon, he just shrugged! You're right, you have to fight, it's just a bit hard to get the energy sometimes!
My mum's tsh is 5 but noone gives a crap!

Just skim read this but yes tsh must be much lower than that, I know now I feel much better below 2,but it does take a while to stabilise and for me to feel like my body has caught up with the levels - sometimes as much as two or 3 months for the muscles to recover and your cognition too, so you may still be on catch up. When my tsh was 7 a few years ago and I was working flat out I actually started slurring my speech and swear I shouldn't have been driving. You could try a couple of different gps first as I am always astounded by the difference in their knowledge and approach. You actually have a right to be referred to an endocrinologist if you can face the battle with the gp, for a second opinion. Two obstetric consultants recently told me I could have seen them sooner if id requested.

I noticed improvements in energy with vitamin b complexes eg berocca or other - cheaper version in Asda but they add calcium so don't take within 4 hours of thyroxine as it interferes, I think iron does too, but no iron in berrocca.

I wish I'd joined the British thyroid foundation sooner, a wealth of support, and if you can get to a meeting it can be so helpful to hear others stories. A local.consultant at my local meeting hands out a chart for you to record results and muscle state, plus mood etc for him to collect back in (as he knows the lower end of tsh is better!)

The other thing is iodine. My cousin is a scientist and researches this in Edinburgh and gave me lots of advice recently (as did guest obsetric consultant at recent btf meeting on pregnancy as iodine nec in preg). Dairy is the best source, esp fat free milk and yoghurt, as well as mackrel. 2 to 3 dairy servings a day (or more if you fancy it - I love dairy!) and a couple of oily fish servings a week should be fine. sugar free natural yoghurt is best and I noticed my mild reoccurrant thrush disappeared when I started including some daily. Never take iodine/seaweed supplements; my cousin is currently researching them at mo and said its hard to get ones that aren't polluted with mercury etc and not least too much iodine is as bad as none and the levels are just too much in holistic supplements - it can cause lots more problems.

When you do finally feel better (you'll find impossible until you do) try increasing your exercise, I've found improving my aerobic capacity and also a bit of strength (ashtanga yoga, swimming, even light weights) has helped when I've then wobbled a bit - I really notice the difference in my muscles now when hypo but ive recovered my energy more quickly as a result of being fitter before hand (not my brain though! - no idea what helps that other than rest until it gets better!)

I notice my levels changing most in my (sorry tmi) toilet habits, and now go straight to the doc when I start to get very constipated. It's worth looking into different fibre types, some just make you more compacted, (and painful wind) for example brown rice seems to be bad for me when hypo but porridge is good - veg seems to be the best, a recent discovery being beetroot!

Hope you feel better soon, people with good thyroid function never have a clue how it makes you feel xx

Merci - tsh of 5 is accepted? Wtf?!

I know! It's outrageous. We are in different local authorities. They won't even look at t4 there. I keep telling her to get a private test done but she won't. Given up asking now :(

I know! It's outrageous. We are in different local authorities. They won't even look at t4 there. I keep telling her to get a private test done but she won't. Given up asking now :(

Sorry hijacking here a bit but didn't want to start a thread on the exact same topic. I've just had my yearly blood test and have been feeling fairly crap - TSH is 3.2 and T4 is 17. They don't do T3 "as a matter of course" so I'm going back tomorrow for another test to get these levels following a conversation with the GP on the phone today.

Last week on receiving my results I was fobbed off by another GP at the practice who said levels were in normal range so go away. I'm on 125mcg levothyroxine. I am not ok - after going to the gym I can barely put one foot in front of the other. COncentration is rubbish, I'm cold, skin is dry, eyes dry and despite eating healthily and going to the gym 3 times a week I still weigh 80kg (m 5' 6"). Have read that synthetic thyroxine doesn't work for some people as body can't convert T4 into T3 - hoping test will show this.

Any tips for when I visit the dr again after this next blood test? I am going to make sure I don't go to the same one as before as she is worse than useless.

Hi willpenn, sorry to hear you are feeling rubbish.

Only one thing to consider is that there's recently been worries over a brand of thyroxine - it was withdrawn for instability. Its not yet very clear but people reported changes in thyroid function tests when moving between this brand and others. teva and numark, the 100mg. Problems started being noticed by patients before christmas. I was given my last packet in April and it would have lasted till June but I switched in may as am pregnant. (my pharmacist is currently chasing up further info as is like to know if it was that or my body that went nuts!) Is it possible you were on this and therefore still recovering from the affects? Your bloods might say good (mine said tsh 0.5, t4 21 a month after a big dose increase down from tsh 11, but it took another couple of weeks to actually feel better.) It can definately take me a good 2 months or more to feel better usually. I notice it most in my brain, slight changes seem to affect my cognition and working memory a lot, but it seems to take a while to recover.

You can see the info on the British thyroid foundation website. its extremely unusual however and effing typical it happened right when I became pregnant

I must admit I'm wary of the non synthetic thyroxine as its not easily measurable. T3 is made by your body from the t4 using iodine so make sure you get plenty of dairy and a couple if oily fish a week. (no supplements, v bad)

One other suggestion you could try with a sympathetic doctor is to suggest a minuscule dose increase of alternative days 125/150 - a couple of years ago 150 was too much and 125 too low but I felt great on the alternate days system. I took the odd number on an odd day and the even number dose on an even numbered day. But be prepared to give it a couple of months to notice a change. Hope you get somewhere with the docs soon xx

Willpenn, Your bloods are not good and your GP is an arse (sorry, bad day today lol). Would you increase by 25 yourself and go back in 6 weeks for a blood test or would you rather GP approved first? You don't even at this stage need to check t3, you need a tsh under 1 (well, aim for that, stop when you feel well) and t4 top of range. You don't even have that! Get the 'understanding your thyroid' book and go ask your GP why he/she thinks they know better than a specialist in thyroid disorders and ex-head of BTA

This starts to really annoy me - why can't some GPs listen to the patient?

Agree the more direct method merci describes would get better quicker results. I never had the guts to do this! Though after recent experiences and views of an obstetrician who would like women to up immediately on bpf without wasting time faffing with docs (as I had to) I may try this tact in future if have a faffy gp. the last random new gp I saw (youngish, woman) definately said they try to aim for below 2 with everyone and I now know its certainly below that or nearer one if trying to conceive. After asking to see my history of results last week I believe my gp has actually aimed for 1.5 to 2 in the last few years as I easily suffer from depression. I only started recording my results last year when went a bit hyper and wish I had done many years before. They do panic as they worry about 'over suppression' but the obsetrician I saw at btf meeting said for the 'short' period of pregnancy a very suppressed tsh was not a big deal and I will definately not be in a hurry to drop back to pre conception dose post birth as most women are told to (as obstetrician advised me). I need to get that book. Sounds like its been rewritten since I got the version 14 years ago.

One more thing I have learnt very recently locally is that I now believe that many gps rely on what the labs say about the numbers but the labs don't see the patient and they probably assume the gp is making the educated decisions. I had a registrar (possibly a junior one) quote the tsh ranges to me being up to 4.5 at the antenatal unit at my supposed 24 wk consultant meeting. I stared at her in total disbelief as she really should have known its much much lower in pregnancy. Labs have totally ignored gp's requests to test my t4 on occasions, even when its clearly written that I'm pregnant, and a senior gp had to apologise and said 'they are a law unto themselves' and they'd had many issues with the lab. Mind you even the hospital failed to get the tpo abs done alongside my first t4 and the tsh at 13 wks and I had to be retested specifically for this.

(dont want to in anyway excuse your gp though!)