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Anyone have exprience of constant tiredness with hypothyroidism even after treatment?

(22 Posts)
Bumperlicious Tue 08-Jul-08 19:59:04

I recently had my levothyroxine upped from an initial 25mg to 50mg even though my TSH (I think) levels were "within the normal range, though at the low end of normal. Haven't been tested since but obviously the dosage was upped.

The thing is I still feel tired all the time. It makes bed times really anxious for me as I dread being tired the next day. I usually go to bed around 10.30 and get up around 7. I still feel tired and whenever I complain to the doctor they say "having a baby is tiring".

Does anyone else find the same thing? Is there anything I can do?

WigWamBam Tue 08-Jul-08 20:11:40

It can take a long while for the thyroxine to really start to take effect. It can also take quite some time to get the dose right, so you may still need to have the dose upped. 50mg is really not a very high dose at all, and you may simply need a larger one.

Some GPs like to start on a low dose and work up slowly, so that there is less chance of you having too much thyroxine and getting the symptoms of hyperthyroxism. Maybe this is what your doctor is doing.

Go back and ask for another TFT to be done. You should be having them done very regularly until your dose is established and your symptoms have gone.

Bumperlicious Tue 08-Jul-08 20:26:10

You're right <sigh> I'm so fed up of having to keep going for tests and trying to get a gold dust appointment with my doctor!

My fear is that the result will again be "normal" and then I will be back to square one and the dr's will just dismiss me.

Honneybunny Tue 08-Jul-08 21:35:24

Poor you, i know how awful you feel: been there done that, but will never get used to it! sad

Were you just told that you are within the normal range, or did they actually tell you your TSH (and T4) value? If you did not get the value, you could ask them for it (your gp will know, as they judged you to be within the normal range). Normal for GPs is not necessarily normal: it should really be under 3 (even though commonly GPs use 5 as the upper limit), and i myself don't feel right if i am over 1. which actually reminds me: i should go and book myself in for a test too grin... i have been really exhausted lately as well, falling asleep on the couch at 9pm.

MISSYMINDA Sat 27-Jun-09 00:57:30

My 12 yr old daughter is having a dreadful time and no one is taking any notice. She is on 100mc Thyroxine. She is hypo, but her symptons became, very hot, over active (but the brain fogged), totally drained, unable to remember what she was saying and constant flinching. Against the advice of Drs I shaved 12.5 mcg off her tablet and she's been back to normal for three weeks. Its the longest period of health she's had in years.

mousemole Sun 28-Jun-09 18:09:32

any chance you could see an Endocrinologist ? I got so fed up trying to get my dose right that I paid to go privately and the Endo was amazing. I even now email him occasionally for advice. Best money I every spent. He is London if you want a recommendation- not sure where you are.

Terpsichore Sun 28-Jun-09 21:03:46

Apologies to Bumperlicious - not wishing in the slightest to hi-jack your thread, but mousemole, I would be v. interested in hearing about your endocrinologist. I'm looking for someone to go and see, and I don't know where to start! (I'm in London too)

Doozle Sun 28-Jun-09 21:08:04

Agree, endocrinologist is the way to go. My endo says your TSH should really be under 2, whereas most GPS work to a normal level of under 5 or thereabouts.

Also have you had your iron/ferritin checked? I'm sure my endo mentioned that low iron is common with hypothyroidism. Certainly is in my case and that makes you feel really tired too.

Doozle Sun 28-Jun-09 21:09:24

Ps. Can recommend Kevin Shotliffe, he's based in London and is great.

Terpsichore Sun 28-Jun-09 21:24:00

Doozle, thank you, I might nick this recommendation to follow up, if you don't mind...wink

IlanaK Sun 28-Jun-09 21:33:29

Yes, I definately feel exhausted despite "normal" levels. I am on 200mcg a day and it makes no difference for me. I have been on thyroxine as long as I can remember and this just seems part of life for me. But I wonder if further investigation is a good idea. I am central London so would be glad to see any recommendation of endocrinologist. I have private health insurance too so might be covered.

Doozle Sun 28-Jun-09 21:45:18

No probs, Terpsichore (totally off-topic, are you named after Mousses villa by the way?)

IlanaK, pretty sure you should be covered by your insurance, unless it was a pre-existing condition.

Have you read "Living Well with Hypothyroidism" by Mary Shomon? This tackles the subject of those who still don't feel right despite being on thyroxin.

mountaingirl Sun 28-Jun-09 22:05:52

I think 50mcg is pretty low and would definately ask for it to be increased once you have had tests.

My mother's endocrinologist 37 years ago was way ahead of his time as he didn't treat patients on their blood results but on their symptoms. My sister has had to beg her endocrinologist to let her have T3 to compliment the levothyroxine. It has taken her years to get him to agree to this whereas for me, once I had read various books and was sent for every test under the sun as I was still feeling like a zombie, despite taking levothyroxine and being told by my very nice endo that i'd just have to live with the never ending exhaustion she agreed to give me T3. It's helped, I also supplemented it with thyodine a nutritional support for the thyroid gland and one for the adrenals. I don't take them much now probably should do! As the years have gone on (it's 7 now) I have learned to live with the this. I will never be manic like I once was, I know if I do too much then I will crash at some point soon and then I'll be falling asleep in the afternoons for a week then I'll perk up again. If I go away then I know the day I retun I need to try and chill between all the loads of washing and then I recover faster. It is a miserble illness that Dr's really don't treat correctly.

After reading Dr Durrant-Peatfield's book I recommended him to an aquaintance who is hypo and her daughter has ME, I bumped into her recently and she was full of praise for him. Might be worth a try. Good luck I do hope you feel better soon. x

mousemole Mon 29-Jun-09 12:10:58

Hi
My endo is Mark Vanderpump ( dont laugh at the name). I used to see him at St Johns and St Elizabeths in St Johns wood. He is something like director of the thyroid foundation as well and he is often on tv/radio talking about thyroid probs. I saw 2 duff endo's before him so know what a good one is like. Good luck !
Ps - some interesting info here about the t3 - didn't know much about that, thanks.

lostinthecitylover Mon 29-Jun-09 15:20:37

mm how much roughly was it ?

lostinthecitylover Mon 29-Jun-09 15:20:59

mark vanderpump looks interesting.

mousemole Tue 30-Jun-09 09:12:00

it was a few years ago that i first saw him and I think it was about £200

canttouchthis Tue 30-Jun-09 20:41:18

bumperlicious, I could have written this OP myself...I am exactly the same as you. Was diagnosed in 2005, been on 25mcg now for at least 2 years (initial dose was 50mcg) and have been told everything's 'normal range'. Yep, that's nice, but I feel tired ALL THE TIME. No one is listening... I know how you feel OP.
Having a baby is tiring at the best of times for any of us, but when you have a thyroid problem, everything seems 100 times worse, it's hard to cope with everything.

lostinthecitylover Tue 30-Jun-09 21:06:27

Should have added I switched from thyroxine to Armour Thyroid* (controversial) and seeem to do better on it.

But its only available on private px and my NHS GP doesn't really want to know about it.

*Armour is porcine thyroid and was the precursor to Thyroxine and has to be imported from US.

mousemole Wed 01-Jul-09 08:37:23

lostinthecity - I have heard a bit about Armour - in what ways do you feel better on it. Does your GP prescribe it ?

lostinthecitylover Wed 01-Jul-09 11:41:15

it's hard to say other than I just felt that I wasn't improving on thyroxine. But I did also have anaemia at the time so it's hard to say what was what. I looked into it and found out about Armour and decided to give it a try. I think the reason that some people do better on it is because it has both t3 and t4. And I think thyroxine is only t4.

I get it from a private gp (who tested me before prescribing) (also at Hosp of St John and Elizabeth)- I can't really afford it tbh but am a bit scared to go back to thyroxine and also it would prob mean alot of faffing about. However it might be worth seeing an endo esp as my blood sugar is also a bit high (impaired glucose tolerance).

I also fell out with my old NHS GP over the initial diagnosis of thyroid because despite having quite high TSH (at one point 8) and knowing there was something physically wrong. She ultimately suggested counselling!! sadangry.

So I moved to another NHS GP - they are alot better but it's clear from convos I have had with them that they have no understanding of what Armour is and refuse to prescribe it to me as it's unlicensed in this country. Though it's licensed in the States.

I think the main medical establishment here don't trust Armour (because it is manufactured from porcine) and think that thyroxine is perfectly suitable alternative.

I might be wrong but isn't porcine insulin still used to treat diabetes here?

There is a book which I have read - will post details later which actually links anaemia, diabetes and underactive thryoid.

I just feel happy that it all seems relatively stable atm.

mousemole Wed 01-Jul-09 16:07:50

lostinthecity - very interesting.Glad to hear you are stable at the moment. I am pretty stable because I had RAI two years ago and my dosage is finally right. My GP suggested I was depressed and to go onto anti d's, when in fact my TSH was 65 !! That's why I went private - expensive but worth it. I don't know much about Porcine and Insulin. Interesting what you say about blood sugar. Since my RAI I have issues with blood sugar levels and have to be realy careful with what I eat. Oh its all a pain really isn't it grin

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