Hi all, I;m really hoping someone could help clarify some things for me.
I've been Hypothyroid for 14 years, treated with T4 only Levothyroxine, my levels are rarely stable for more than a year and have been treated with anything from 100mcg - 175mcg over this time.
My main problem now is in the past 9 months I've had a real return of many hypo symptoms, my weight has increased, my hair has thinned and fallen out, my skin is dry, my eyebrows have thinned, I'm extremely cold and of course the crippling fatigue. I've had two blood tests during this time, as a result of my first one my Levothyroxine was reduced much to my dismay from 150mcg to 125mcg, despite my protests my GP refused to do anything until I had tried this dose for 4 months and had a further blood test.
My results today were TSH - 0.08, T4 - 13. My GP has said that as my T4 is in range that there is no further action required, I'm feeling really dissapointed as I'm still feeling incredibly hypo and really struggling with the fatigue, I've arrange to speak to my GP tommorow and am hoping he'll agree to test my T3 levels as I'm starting to think their might be a conversion problem, can anyone clarify is this might be a possibilty based on my results or have any advice that I can speak to my GP, any help is really appreciated.
Do you have a thyroid? Is not the gp should not rely on tsh... You want ft3 done getting the labs to test this is abit if a struggle in lot of places ft3 is the most important test this is how much thyroxine you have available to be used by the cells... Ft4 is just what's circulating!
Sorry to hear you're feeling so bad, I recently started taking Levo they started me on 50 as that's the starting dose, I'm new to this but I have put loads of weight on feel pains in what feels like my lower bones in my legs, freezing feet and hands and then the next minute sweating x it's a nightmare. I'm also deficient in vit d. Back tomorrow for more blood tests and hoping that sometime soon I get some answers. I have decided that if I can't get any answers to improve my health in the next month I am taking it further via complaining to the practise manager and if need be higher then higher. We all have the right to feel well. The minute they refuse that .... They are not doing their work x we have the right to tests explanations and correct diagnosis x best of luck and keep in touch
You are quite right to ask for T3 to be measured. That is the hormone your cells need to give you energy and a sense of well being. If your doctor has read about all this at all, reverse T3,(rT3) would also be a good measurement to make. rT3 will tell you if your T3 is getting to your cells or if it is being "blocked".
If you are new to this, you may have to change doctors unless the one you have is interested in endocrinology.
Hi Nikki, your T4 at 13 is low. What is the range? If your thyroid is not producing enough T4 then there won't be enough to convert to T3, which is the active hormone. That is why your symptoms are classic underactive thyroid ones. If your doctor doesn't think your symptoms are thyroid related, what does he think is causing them? It is a disgrace that he has decided to reduce your dose of levo, which is the T4 hormone. Find a sympathetic doctor who will test free T3 and dose you according to symptoms and not lab results.
hi, dawn, I have just been diagnosed with hypothyroidism,and been put on 50 ,I was glad to see that you have the same problems as me.
I also have pain in my lower legs making my walking difficult ,I also am cold most of the time ,but I also have heavy sweating from my head , so much so that it runs through my head face and neck
I am on my first week if the tablets and every bone in my body has ached, plus i am very lethargic ,i feel terrible,!! i am hoping that i will feel better soon x
I've been on the Levo 50 for 3 weeks now but apparently it can take upto 6 or 7 weeks to get into the system, I feel like the heavy fog has lifted and it is a little easier. The same feelings in my legs but the doctor doesn't think they are linked. It does help us all getting together reporting on our issues as then at least we know it's not all in our mind !!!
Keep in touch and let me know how you are feeling as time goes on
Dawn, the "feelings" in your legs ARE probably linked to your hypothyrdic symptoms. My NDT dose is marginal, i.e. all my T3 is used up by the time I wake up and my legs hurt (walking to the bathroom) first thing in the morning until I have taken my Armour and then all clears up and I'm great 'till about midnight. Get your T3 measued and make sure you are at least 1/2 way up the scale. If you are not, then make sure that you are not a "feeble" converter (of T4 to T3), as I am. But that is step 2. It is the lack of T3 which causes the bad feelings of many types.
I did ask to be referred to an endocrinologist byt they said no. They do not do testing for T3 levels either. Is this the NHS state now as I am in the UK, private is not an option for me.
Hi, doesn't low TSH (below lower range) mean that the pituitary is not detecting a shortage of thyroxine therefore not stimulating the thyroxine gland to produce more.
I have recently realised that I should not have been drinking caffeine containing drinks (as well as not eating) within half an hour of taking Thyroxine medication. My TSH has now dropped to 0.05 (range 0.35 - 5.50). If I am correct that means it is now in the hyper zone and that I need to cut medication not increase it yet the message is only to make a routine appt. Your thoughts??
Hi all thanks for your comments, unfortunately my GP refused to test my T3. He said it was insignificant and he would 'get in trouble' if he did. Feeling really disappointed as still feeling rubbish and it's impacting my job as a nurse. Anyone have any experience of this or can offer any advice. Can I ask for a referral to a endocrinologist, a specific one on the list who will test
The practice I am with doesn't do t4 or 3. from what I have read this gives an incomplete picture of what is going on. I don't know if you can insist they do it. There are places who will do tests privately but I haven't used them... YET
I am not suggesting that you go to private doctors but you can pay to have your blood tests done by an independent lab. Get a complete thyroid panel done, this way you will get your T4, T3, (both free and total) reverse T3, TSH and your antibodies. This will let you know all of the basics of hypo/hyper thyroidism. You can then take these to any doctor on the NHS and discuss the results with him/her. If s/he brushes this off as something s/he is not interested in, you must change docs - your life may depend upon it.
If you Google "Independent blood diagnostic labs" you should find all which are available in the UK. Many of them, like in the US, will operate from the intenet - I use one of those. You select the test you want and pay them, they send you a purchase order and tell you where the nearest lab is, you just go along to that lab and your results come via e-mail about 3 or 4 days later. If you are really interested I could PM you a good one which operates here in the US but is also global (I can't put thier name on open forum - it would be advertising according to the moderator).
It is absolutely essential to know all of your numbers, not just TSH and T4 - those tell you very little unless your are very, very hypo, like TSH = >10 then it tells you something.
If your T3 turns out to be low, then you must move to the next step, what are you deficient in that you are not converting your T4 to T3. If it is not a nutritional deficiency, then you must take T3 as well as T4 - or an NDT. But get your Thyroid panel done first, that is basic.
Hi Anne, the pituitary gland only detects T4, the storage hormone. It cannot detect whether T4 is properly converting to T3, which is the active one. Also, lab ranges for TSH differ from area to area, so it is by no means an exact science. However, doctors generally slavishly use the TSH test as an indicator of thyroid problems, rather than treating by symptoms. And, as you know, the only available treatment on the NHS is the synthetic T4 which was 'shoe horned' into the market in the seventies without any double blind placebo trials.
Hi antoinette, since losing weight have you reduced your dose of thyroid meds? If not, this might be why you are getting symptoms again. Reportedly, as a guide, one needs 1.7mcg of thyroxine per kg of body weight.
It's worth trying a different GP at the same surgery. They do have different views on the matter. Say you're still having underactive symptoms so something else must be wrong and that you know T4 has to be converted to T3 by the body, and you are wondering if your body is doing this conversion properly. This will give your GP the justification they need for the extra tests.
Hi everyone, try registering with tpauk they have a wealth of information to help you understand what is going on and practical info re where to get blood tests etc.
I went to see a locum doctor because I considered it more urgent than "routine" - it meant waiting 2weeks!. Locum suggested dropping meds 25mcg from 150. That seemed very little and we finally agreed on 100mcg. This assumes that not eating or drinking my 2 cups of morning tea has made this huge difference. What do you think?
I have also been suffering from really bad muscle weakness and pain which escalated overnight, spread from abdomen and legs to shoulders and fingers. Clear blood tests so no response from doc. Surviving on iboprofen. Stress also a factor - supporting neighbour with secondary breast cancer.