Medicated for hypothyroidism, but still showing many symptoms

[ItWillAllBeOkayInTheEnd]

I have been taking levothryoxine for over 10 years, currently on 150 mg (mcg?) but still have about half the symptoms from the list on the thyroid uk website (tired, overweight, dry eyes etc).

Looking back at my last test results, it appears that the only thyroid test which was done was Serum TSH level which was 3.9 with a healthy range of 0.35 - 5.0. I had asked for a full set of bloods because I was particularly concerned about my weight. My GP specialises in endocrinology. I have an appointment booked for a few weeks time. Does anyone have any suggestions for what I should be asking for?

Endo! Stupid phone!

I take my meds at bedtime nowadays - I can’t stand taking them in the morning and being ravenous all day (I don’t need any help whatsoever to gain weight!)
I then take multivitamin in the morning.

In our area GP cannot request T3 or T4 . However your TSH is on the high side of normal and a conversation with your Dr can be had around trying to tweak your dose up a little. After all you will have a repeat b test in 3 months or so and if you are over replaced that will be clear from the result.

Ps we are all meant to take Vit D daily at least through the winter in the UK and increased doses if dark skinned.

Does levothyroxine make you hungry? How did I not know that? Explains a lot

I go through periods of being hungry on it. I cannot take it at night, as then I can't sleep. I do have a cup of coffee immediately after taking it, but I need both the meds and the coffee to become a human being. I am always tired and have been for as long as I can remember now.

I have sore feet a lot of the time. I was told it is a sign that I am not converting T4 properly, but the endo told me its because I am on my feet all day - or that its my age. Everything was down to my age, but after a few weeks back on an increased dose, a lot of my symptoms are improving. Sadly, my feet is not one of them. My hair is growing again though. Luckily, my eyebrows are pretty much invisible because they are so fair, so the missing outer ends of them are not that noticeable.

I might look into my vit D and B12 if I can ever get an appointment with my GP practice at a time I can attend.

@LittleCandle see what I said earlier about sore feet.

Can you not set an alarm and take levo an hour before you get up in the morning so you don't have to wait for your coffee? If you're symptomatic and not converting well you really should be optimising your absorption and coffee will be inhibiting it.

I understand, we do what we need to do. When I occasionally forget to take it an hour early I sometimes drink tea 15-30 mins later. If you do it every day it has more of an impact.

littleCandle I find it difficult to wait for the coffee too. I do drink coffee without milk though first thing, as the endo said that milk/calcium makes it less likely to be absorbed. I now wait 30 mins for coffee that is without milk, and I find a cup of hot water to sip in that coffee shaped hole just about tides me over, or take pills before I get dressed shower (although kids hit shower first thing not me, so that is difficult) I also tried the trick of putting the pills in those little named days of the week boxes so that it was easier to just tip them into my mouth when I woke up.

If you cannot face the wait for appointment, you can buy a 10,000 iu supplement (from chemist, some have these dosages) and have one a week, very quickly you will notice the difference with your feet . then get test done anyway, but at least you will have a bit of help from a supplement. You are almost certain to be deficient if you are in the UK and don't have a job working outside all day all summer, and being deficient affects the efficacy of thyroxine. Endo has told me my level should be at least 100 per mol of blood and to take at least 2,000 iu (that is 25mcg dosage x 2) a day. all year.

mine is instant coffee too so weaker. I was told the caffeine interferes with absorption as does the iron in tea?tannin and caffeine. any milk interferes. and all food really. that's why the hour wait is necessary. And never take vitamin d at the same time as thyroxine - I think you meant to leave a four hour gap

I drink instant coffee at home - who has the wherewithal to make proper coffee first thing? I don't quite drink it black, but to be honest the couple of drops (literally!) of milk hardly make a dent in the colour. I don't eat until after I have taken the dog out, as I don't generally get a break before mid-afternoon at work, so eating early would leave me ready to eat my arm off! Getting up an hour earlier just to take tablets is not really do-able either, given that I am up early anyway. And yes, I could go to bed earlier to make up for that, but I don't want to be going to bed mid-evening. I'm a light sleeper, so don't want to be wakened up by everyone else coming to bed.

I may also say, that all this advice is completely contrary to what I was told when I first had my thyroid out. I was told it made no difference when I took my drugs or what I took them with. I have always taken them on an empty stomach, however. The advice has changed since I had my thyroid out in the dark ages.

I’ve been n thyroxine for over 15 years. Never knew it mattered about the time of day / taking with food.
I’ve felt not right for months now. Had suite of blood tests and GP (well, phone call back from his receptionist) said results including thyroid all normal but but D low and to take over counter but d supplement. So it’s interesting to read that Vit D could be related (I assumed it was separate but giving similar symptoms)
Wondering whether to carry on and see if I improve now on the vit D. Or should I push for gp appointment to discuss it all properly?
Maybe I need to stop my cup of tea before I get out of bed? :(

I had my thyroid removed last year after 6 years of recurrent Graves Disease so now on 200mcg of thyroxine a day.

From my many years of experience with blood tests the GP blood tests (in my area at least) will only check the T4 if the TSH is out of normal range. I could only get a routine T4 test and definitely T3 with a blood test form from the endocrinologist. Before my operation last year I needed a full and detailed blood test and it was hard work to get it done through the GP as I had been discharged from the endocrinologist as my surgery was done privately.

If you get no joy from the GP could you see an endocrinologist privately? I did once as my overactive thyroid had returned, I felt awful and the wait for my NHS appointment was so long. The only issue was getting the private prescription changed for an NHS one.

I saw the endo for the first time ever on the NHS last month. He could not have been less interested, except to tell me that I have been being treated incorrectly (according to current guidelines) since having my thyroid out. i can't afford to see a private endo and so far everything I mention to any doctor is straightaway connected to my age. The only exception has been my hideously duff ankle, but that has been an on-going problem for 11 years and I am waiting for an appointment to finally (I hope) sort it out surgically.

Gp’s are notorious for knowing nothing about thyroids. One at my surgery actually told me I should not be taking levothyroxine long term despite it keeping me alive due to having my thyroid removed due to cancer ! I directed her to my endocrinologist, who has already lodged a complaint about her attitude.

I was told to take levothyroxine in the morning half hour to an hour before eating. Particularly if it’s dairy as that can inhibit absorption. Also do not take other medication at the same time in the morning as levithyroxine as it can interfere with it as well.
Some contraceptive pills disrupt the conversion from T4 to T3, so your blood tests will show enough T4 in your body but unless it gets converted to T3 you will still have symptoms. You really need T4 and T3 levels checked along with tsh to see if your converting properly. I don’t so I take liothyronine which is T3 and gives my body a boost, along with levothyroxine.

The sore feet and joints can be an indication of needing to increase levothyroxine. I’ve felt like crap for about 6 months, constantly tired and all my joints were sore especially my feet.
I put my levothyroxine up about 7 weeks ago and the pain is stopping, and the last 2 weeks I’ve not had to have a nap mid week or on a Saturday afternoon (I’ve been doing that for the last year as I’ve been so worn out)

I did a lot of reasearch myself as soon as I got diagnosed as there was a major medical cock up with it all.

@LittleCandle I'm coming back to this not because I'm insisting I'm right (everyone is different), but because I'm not sure if I was clear.

I set my alarm an hour before I have to get up, but I just turn it off, take my pills and go back to sleep. If you get up to go to the loo in the night that can work too. If I have any fear that I won't be able to go back to sleep I set the alarm two or three hours early instead, which helps (for me).

Aside from food, supplements (esp iron, calcium, vit d etc) can interact with thyroid meds too and stop you getting what you need from them.

Re nhs endo vs private, if you're going to see an endo the best thing to do is to see a TUK recommended one: healthunlocked.com/thyroiduk If you read the boards there you can see endos have a reputation for being unhelpful with hypothyroidism matters.

I'd urge anyone struggling with thyroid ussues to do some research on the TUK forum. As with any forum on the web it is not all sound advice but the important things come to the fore. It helped me get my life back.

PS. Re t3 testing, you can buy these tests yourself (there is a fingerstick version you can do yourself or you can arrange to have the blood drawn) but I'd advise doing your research and having a plan first as your gp may take no notice of private tests.

I got what you were saying, @mrsdewinter, but if I am awake during the night, I never get back to sleep properly. I end up in a very light sleep, if I can manage to get back to sleep at all and then I am exhausted all day. I have to take blood pressure tablets in the morning as well.

I have been on the TUK board and the guy I saw is meant to be quite good. However, he wasn't interested in me because I am in my 50s, therefore everything wrong with me is my age. He agreed to put my dose up - after lecturing me about being prescribed this dose in the first place, like it was my choice (my choice would be much higher!) - and told me that after I have a bone density scan, my dosage will be reduced down as far as they possibly can get it and I shall just have to learn to live with my symptoms. So you'll pardon me if I am feeling extremely pissed off with the whole thing. If my GP continues to be a dick about it, I shall just buy my meds from the internet and they can go to hell. Perhaps in another 10 years the medical profession might be prepared to listen to me.

@LittleCandle no I totally get it, I've been there myself. I only recovered on t3/t4 combo in the right proportions. Also b12 injections and various supplements (iron, d etc).

One of my symptoms (when I was undermedicated) was very light, restless sleep. I wonder if you were on the right dose of the right meds if that would improve.

If you do the research and monitoring you can self-medicate. I've done it. It seems to be a big problem if you're not one of the folk who responds well to levo (or if you're one of the lucky ones who has few/no symptoms) that both gps and endos can be unhelpful and unpleasant about it.

If you're already on TUK there is nothing I can add, all the good stuff is there. Good luck.

I don't know if this is a co-incidence, but I've been really careful about taking my meds one hour before food & drink for over a week now. I'm more tired in the mornings and I'm snacking more. Surely that's the opposite of what I expected to happen! Any thoughts anyone? Or does it have nothing to do with the levothyroxine?

Probably too soon to see any changes re thyroxine tbh. Could be some kind of adjustment to do with eating breakfast later, maybe you're not sleeping well etc. Unless you really don't convert and you're one of those people who feels worse on a higher dose? But this is such a small tweak I'd chalk it up to mornings being lighter or something, reassess in a month or two.

I definitely haven't noticed any palpitations, but I'M SOOOO HUNGRY......!

T3, and reverse T3 are rarely tested. The endocrinologists are just there to keep you alive, unfortunately.
I read 'Stop the thyroid madness' after having A total thyroidectomy. I'm on 50mcg Levo, plus 2 grains of Thyroid-S per day. I'm loads better. Work full time, no weight gain. I do get tired at times, but I was virtually comatose at the beginning.
No thyroid- 25 mcg Levo, no other help.
My GP is happy with my meds, but I have to source Thyroid-S myself. NHS do not supply NDT, because it is a supplement and cannot be licensed.
Costs me £40 per year. Best money I spend.

Last I heard the NHS can supply NDT on a 'named patient' basis, but they don't for various reasons. They are not wild about anyone taking t3 for one (as you say they certainly don't want to test it), and I think they just don't know anything about it so feel uncomfortable taking a view on it.
www.thyroiduk.org.uk/tuk/treatment/where_to_get_desiccated.html

I haven't had my GP appt yet, but I had to do a blood test to get my repeat prescription anyway. Would anyone like to comment on my results - apart from the obvious, they only tested TSH & T4!
T4 -- 18.9 pmol/L range (9 - 24)
TSH - 2.7 mu/L range (0.35 - 5)
thanks

I feel rubbish unless my tsh is well under 1 and preferably right at the bottom end of the range. So if they were my results I'd need a tweak of meds OR make sure I'm on the same brand of all dosages and on every prescription.