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Original poster

Thyroxine for the newly initiated

69 replies

MothInMyKecks · 22/10/2011 11:13

I've been on 25mg of Thyroxine for nearly a fortnight now. Because of my extreme fuzziness, I didn't ask any details of blood test results so I don't know how Hypo I am. I am also extremely anaemic apparently.

I had a few days of feeling 'charged'; and for a little while, I was wee'ing for Britain, but all that's stopped and have now crashed and burned again. My symptoms are worse than ever and I feel I can't continue like this. I have 2 young children, a workaholic husband and by bedtime, I'm literally on my knees. I look, and feel terrible.

I'm getting the typical iron-supplement related SE's (black poo) but not feeling any of the benefits either. I leave at least 12 hours between the thyroxine and Ferrous S as I read (wasn't told by either GP nor Pharmacist) that FS can negate the effects of Thyroxine.

Am I doing everything right? Do I need to wait another 6 weeks before my next round of bloods before seeing the GP. I feel worse than ever. I can feel myself getting worse too. My weight is rocketing, fluid retention is increasing too. I can't continue like this. Sad

OP posts:
ciwi · 22/10/2011 11:39

Hi, I was started on 25mcg in April this year, it took 4 weeks for me to feel any affects at all and then ended up going on 50mcg and another 4 weeks to feel anywhere near my normal self. I suffered with water retention too along with depression which for me was the worst of the symptoms. It would really help if you knew your results as some doctors are less proactive at treating it than others. I found that after I had been on 25 for 6 weeks I got my bloods done and they said they were fine even though I still had symptoms, when I asked them for the actual levels they were still a bit hypo and so I asked them to increase my dose and have been much better on that. My advice would be to stick it out for another 2 or 4 weeks and then get your levels done again. It takes 4 to 6 weeks for the tablets to kick in and give a proper indication of your levels on that dose. When you get your levels done again don't be afraid to ask what they were and tell them if you still feel symptomatic. the guidelines for TSH in this country is 0.5 to 6 but I found that I only felt better when my TSH was 2 to 3. The guidelines in some other countries is below 3.5. Hope this helps, sorry if I have waffled too much. I know it's a pain but it does take time to get your levels right, I hope you feel better soon.

Bearskinwoolies · 22/10/2011 16:52

I would add to Ciwi's excellent info ^ to take your thyroxine separately (approx an hour) from anything with calcium in (obvs milk, cheese etc) as it really interferes with the absorption of the tablet.

Check and see how much caffeine you are drinking - before I was diagnosed with hypothyroidism I was self medicating with lots of coffee/energy drinks etc, and it can lead to the crashing/burning problem.

If you find you are really struggling, then definitely go back and see your GP - they'll be able to arrange for quicker bloods etc.

Hope you get things sorted & feel better soon. Smile

starfishmummy · 22/10/2011 17:09

25mcg is a fairly low dose; you do need to give it time and it may be that the dose does need to change. Your doctor should have discussed how soon you need to be tested again - I was started at 25 and tested every couple of months to start with - with increases until my levels were ok.

littledumpling · 22/10/2011 17:54

Hi MIMK
I know this is of no help to you but I had my thyroid completely removed years ago, believe me I know the struggle your having. Ciwi and BSW are right in what they say but can I advise you to make sure your Doc checks both levels for thyroxine. Not only your TSH but also the TFH (thyroid function hormone) I think thats right. It matters, and Docs get a better picture with the results of both. It should be done automatically. ASK for BOTH. Don't let anyone fob you off and do your homework. Due to my own lack of curiosity - wow have I changed !!!... I was taking far too much thyroxine, -long story- had no rest between heartbeats which scared the pants off me. So saw my Doc. who none-to-gently checked my heart, ..things were put right, the amount of thyroxine lowered, but too low ! felt like I'd crawled into the original black-hole. Had heart attack.
Thyroxine re-ajusted, but had put on three stone in the meantime, but feel totally OK now. What I want to say is stick it out. Yes it can take ages but once its right you'll feel so much better. From time to time it might need tweeking but it only involves a bloodtest for both levels. But do stay on top of things, get your levels checked reasonably regularly, not like I was, be aware and if necessary be Bolshi, and You will stay in control of you. Sorry if I've gone on a bit but it needed saying. Incidently my husband has a very good description of me when I lose energy, 'its like someones popped a paper bag- there's nothing left' Stay strong.

Original poster
MothInMyKecks · 23/10/2011 05:33

Thanks everyone. It's helped to hear from others.
I'll stick this out for another 2 weeks at least before going back. My DH is keen for me to go ASAP because I don't think he can cope seeing me like this, but I'll plod on for now.
What does being Hypo mean long term? I'm reluctant to research health matters on the internet (mother is a complete hypochondriac and I'm always fearful of ending up the same lol) so I don't know what to expect. Any decent literature on this?

littledumpling Heart attack? Oh my God.

OP posts:
Iamseeingstars · 23/10/2011 05:46

Dont be too scared of researching on the internet, but just be aware of the information you read, and look for common themes. It can be quite useful to know what side effects you might have because then you can relate to them as being normal or not normal.

I tend to type in the blood test name or condition and add blood test to the search so that it comes up with lab sites which are more useful than lots of sites.

I dont know your particular drug but I am also extremely anaemic due to leukemia and completely understand where you are at. I am a complete and utter wreck and just not functioning at all. I have a couple of good days and now I am back to wasting the day and night away, unable to do a thing.

I would go back to the doctor. He might tell you you need to wait a few weeks to kick in, but at least you know, and at least it is on record that you are having problems. There is no reason why you shouldnt have regular blood tests as well. This is the best way for the doctors to see what is happening to your body.

Good luck.

Keep up your fluids, no matter what

WelshMoth · 23/10/2011 09:25

Iamseeingstars, thank you for your advice. I'll be sure to drink plenty - it's always good to be reminded.
I'm sorry about your leukemia - I hope you're ok now?
Good advice re GP. I will go back to let them know what's what. DH will feel happier too. I think he feels totally out of his depth with this.
Take care, and good luck to you too.

Bearskinwoolies · 23/10/2011 15:12

For non-scary information this is a good site www.patient.co.uk/health/Hypothyroidism-Underactive-Thyroid.htm

ciwi · 23/10/2011 15:15

moth as far as I know, being hypo only affects you while you are hypo if that makes sense. Once your levels are ok it shouldn't affect you as long as it's well controlled.

Iwasagnome · 23/10/2011 15:22

the dose you are on is very low ,you will feel better as it is put up--I am on 150mg

WelshMoth · 23/10/2011 15:51

Thank you, all of you. I feel better just reading this. I'll go through the link when everyone's in bed this evening. The mental fog is horrible - eldest DSD asked me today how things went yesterday (I went to a good friends house and we took the children to a play area) and I had a complete blank. I couldnt remember at all what I had done. DSD had to remind me.... Sad

Bearskinwoolies · 23/10/2011 17:18

Moth - the memory thing will improve, promise! I honestly thought I was losing my marbles when I couldn't remember things, couldn't even do a crossword Sad

I've just had my dose upped to 125mcg, but I know it will be increased again, as my hands & feet are still problematic, & sleeping way too much.

Have a Brew and some Thanks and I really hope things improve quickly for you. (Have a Bear for a cuddle too)

WelshMoth · 24/10/2011 22:59

Thank you, Bear. Right back at you Smile
You've helped a great deal.

WelshMoth · 24/10/2011 23:19

God, my memory. Came on to update, but saw Bear's lovely message and whoosh, memory blipped (again).

Saw GP this morning. Since I'm feeling progressively worse and worse each day, I thought it wise to at least let the GP's know. She's printed off a new request for bloods, but this time a more thorough tests which includes Coeliac's Disease. Apart from that, she said that I had to wait it out for another 4 weeks.

When I asked her what my levels were, she didn't give the exact figures but said..."verging on slightly low, but the lab stated that it's not enough to give you any symptoms". I was a bit numb when I heard that and felt (and still feel) a bit of a fraud. I was sat there, close to tears telling her that I was worsening, yet she made me feel like I had no business feeling like this.

Why am I feeling like this? I don't want to have Thyroid problems, but I'd sooner know there was something that could be tweaked, rather than feel like I'm just being slow and lazy, and sluggish.

PS Note namechange through this thread - I was feeling patriotic with the Rugby. Sorry to cause any confusion.

tb · 24/10/2011 23:46

US research shows that the optimal dose is about 1 microgram of thyroxine for every pound of normal body weight. So......25mcg isn't really enough for anyone, and - for some unknown reason - gp's are very reluctant to up it except in very small stages.

jaype · 25/10/2011 00:50

tb - it takes a while for the body to get used to it, and upping doses by large amounts can cause problems, which is why this isn't done.

Bearskinwoolies - have you had your Free T3 levels tested? It may be that you are one of the unlucky few who have problems metabolising T4 into T3 (the type of thyroid hormone the body's cells can use, as opposed to T4 which is not useable). When levothyroxine goes into the blood it ups your T4 levels, the idea being your body then converts it into T3 to use it. If you have upped and upped your dose and still have symptoms, look into this. I have just started taking T3 replacement and within 2 weeks the aching joints, narcolepsy after 10pm, mild recurring depression and general lack of motivation has disappeared. Hopefully the extra 18lbs I have gathered will be next to go. We can but hope...

Bearskinwoolies · 25/10/2011 03:16

jaype - I'm not sure tbh, but I will definitely check, thanks!

tb - A couple of months ago (due to my crap memory) I managed to take 150mcg instead of 100mcg, and was quite unwell for about a week.

Moth - I'm glad you went, hopefully this new set of bloods will bring answers for you. Is anaemia a possibility? I have heard that people with hypothyroidism are more susceptible to this.

WelshMoth · 25/10/2011 08:23

Yes, definitely anaemic. Am on iron tabs but doc didn't tell me that I needed to up my Vit C to process the iron. Have been taking them faithfully for a full fortnight now, eating red meat and spinach like you wouldn't believe and still not feeling any different. Not getting the constipation either which I thought was a guarantee with Ferrous Sulphate.

Thanks for everyone's input and keeping this thread going. In RL, I feel very much alone.

WelshMoth · 25/10/2011 08:28

I feel extremely breathless too and my brain fuzz is worse than ever.

I mentioned Anaemia to a friend last night, and since my periods now last a fortnight, she suggested the Mirena coil to halt menstruation and perhaps put a stop to this anaemia. I wonder is this a good idea?

ciwi · 25/10/2011 12:06

moth don't listen to them when they say your levels are not low enough to give you symptoms. They said that to me but my symptoms settled a lot when my levels were better. I had to push to get my dose increased even though I was still slightly hypo, eventually when I went back to the gp and told her I was feeling better after an increase she back tracked and said she thought it was my thyroid causing the symptoms then. IMO anything that might stop you bleeding for 2 weeks a month can only help with anaemia so maybe it is worth looking into.

Bearskinwoolies · 25/10/2011 15:12

I agree with ciwi - it is def worth looking into.

Re the anaemia - have you looked at a product called Spatone? It's an iron rich supplement in liquid form, which can be mixed with orange juice (to improve the flavour). It's also worth asking the dr if you could (if not already) change from Ferrous Sulphate tabs to Ferrous Fumerate tabs. They are more readily absorbed by the body.

PerAr6ua · 25/10/2011 23:22

evening all. I'm a newby to thyroxin too - started on 50mg beginning of september, thenhad it upped to 75 3 weeks ago when my thyroid started swelling - and hasn't gone down yet so I permanently feel like I'm starti g a cold. Craving sugar like nobody's business - not sleeping so much as I never have but spending a fortune on eye creams...

scan in 2 and a half weeks to see why thyroid swelling after treatment, bloods in a couple of weeks to see whether dose is high enough, would mostly just like to crawl into a hole and avoid the world for a few months...

sorry, not cheery.

but I'm assured the magic pills will work whdn they're strong enough, and in the meantime the free prescriptions aren't wasted as I'm chowing down on codeine for the lovely extra joint pains - which I am actually glad to know aren't just crappy joints, but will ease - and are better already.

you know the weirdest thing? I can't remember the last time I tasted a colour. Am used to strong flavours having distinct colours and shapes attached, but not for a while now. Kind of hoping it comes back...

Bearskinwoolies · 26/10/2011 04:04

Wow PerAr6ua, thats synesthesia, isn't it? An ex of mine had the music-colour type.

Grin at the magic pills - they do work - promise. It's just finding the suitable dose for you; I was stable for six months on 100mcg, then my thyroid packed in just a little more, and back came the joint pain. I find that the bottoms of my feet are quite sore, and I am back to having carpel tunnel problems.

A goitre is generally due to a lack of iodine in the diet - about 80-90% I recall.

Keeping my fingers crossed that you feel better soon.

WelshMoth · 26/10/2011 07:57

Sorry you're feeling so low,PerAr6ua - I can certainly relate to the desire to crawl into a hrole for a few months. I can also relate to sugar cravings, and now that you mention it, aching joints too. In fact, the more I read, the more I realise that these syptoms I've tolerated for months and months, are all related to my blasted thyroid Sad.

And this brain fuzz.....God. That's got to be the worse thing for me. Even my speech seems to have slowed down.

Hoping the magic pills will start working for us all.

katiewins22 · 26/10/2011 20:01

Hi Welsh Moth - I have come over to your thread.

I dont know if I have asked this before - do you get a bit shaky when you need to eat. I do - if I have gone a while between eating. I feel a bit trembly. I know this could sound like a diabetic symptom but I don't have any other symptoms associated with diabetes - thirst, frequent visits to loo, weight loss - most definitely not :(

I also don't feel as exhausted since taking iron tabs (first shop bought and now prescription) - but I have made another appt for end of next week and I am going to ask to re-take my bloods and will take a full list of my symptoms. I think maybe I was a bit reluctant to list too many in case he thought I had just lifted a list from a website.

Feel free to revisit my thread anytime :) Kate