T3.............9.2.......................(3.5 to 6.5)
Antibodies......Less than 28...(less than 60 is Normal)
I'm sorry if I go off on one today...but...I am so frustrated and angry! I have peen partially self medicating (Levo top up from the late Dr. S.) The gp prescribes 75mg and with the gp permission, Dr. Skinner had put me up to 125mg with a view to further increases or adding T3 NDT ? As I have still been unwell since he died and had no help whatsoever from gp, I have increased slowly to 175mg and still unwell. I am in bed at least a couple of days a week and NO energy, fibro pain etc. etc. I am considering buying T3 ? or NDT ? online but I have an endo appointment 28th Feb, so thought I would hold off until I see him/her. ( I really can't afford to though and why should I have to pay for my own meds?)
Anyway, I had bloods done and a gp phoned this morning with results ( I saw her only because my gp had called in sick that day!). She was in a total panic, Insisted she would lower my Levo to 50mg as she was totally responsible for my health as she had issued a Levo prescription. (Only concerned for herself I think) I had to make a face to face appointment today, I said No. I did tell my gp I had increased to 175mg but she was so rude! I wouldn't tell her how much I was on! (I'm in bed for past two days and today my body has completely crashed!). I did get a bit excited at her, as none of them know how to treat the thyroid, ( What's NDT ? and T3 is such a Dangerous drug, you cannot have that.) They cannot treat me with something they have not been taught about !!! Well Learn !!! Please !!!
My part-time gp (I see two in the practice) did agree to testing Ferritin etc, awaiting those results. The others I am confused about, brain for, I cannot think. It looks as though I am over medicating ? but I don't have any toxic symptoms. I am worried about seeing the endo, I have asked a couple of friends to come with me but they have work commitments, I am on my own, (I lost my marriage, job etc. because of all this) I am dreading it. If they don't help me I'm done for.
Thank You to anyone who may reply, I do appreciate your help.
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evey
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You are clearly overmedicated by quite a way, the symptoms you get don't have to be typically hyper ones they can and frequently do feel just like hypo symptoms so you think you need more when in fact you need less Levo.
I was overmedicated for a while (no where near as much as you ) and it left me with angina and osteopenia.
I, too, am concerned you are overmedicated, and if you are no better at all, it's probably not a good idea to have such high levels of thyroxine and T3.
Have you thought about looking at your B12 levels? The symptoms of B12 deficiency are very similar and, in my experience, many people have found out that they need B12 and improve their symptoms...
I've had a load of other tests done, but can't remember what they all are. The results won't be in for a week or two as they had to be sent to labs around the country. I will put them up when I get them.
How quickly should I reduce my Levo do you think? I increased at a rate of 25mg every three weeks.
Not too quickly, I think I went down by 25mcg every 4-6 weeks, took 18 months in all to get back to a normal stable level as I went a little to far the other way so had to tweak quite a bit.
I would like to say any medication can be bad if you take too much. Your doctor is worried about you and particularly as she is the prescriber of levo, she has a duty of care. Another point, particularly for people who are on T3 alone, that it isn't dangerous. It as not a storage hormone like levo but is the Active hormone. This is a link:-
I agree with all the above comments that you are over medicated and need to reduce but I would reduce a bit quicker than 25mcg's every three weeks - try every two and see how you go.
You really do need all your vitamins tests, not just ferritin as this was the mistake my doctor made with me. Like you I was still feeling awful on T4 only so managed to get my GP to give me T3 only for it to cause me heart troubles - not serious but serious enough to have an operation I was due cancelled and to be sent to see an endo. It was only when the endo did an extensive list of tests that it showed up I had low vitd (again), low iron, my B12 wasn't great even though I had supplemented this myself, my folates were low and my ferritin levels were on the floor.
I had been asking my GP for nearly two years to test all these for me but she kept refusing (finally gave in with the Vitd) and due to this I had got thyroid symptoms muddled up with low vitamin symptoms so when I was given the T3 my body then kicked against it, as it didn't actually need it, hence the heart troubles. I blame the GP for this as, if she had tested my vitamins as requested I would never have gone on T3 and would never have ended up with heart issues.
Now my vitamin levels are near to optimal you wouldn't believe the difference it has made to my health, and I have had to reduce my levo twice as my body is now able to use it better.
Hope this helps.
Moggie x
Hi evey, what are you temperatures like? I've been in the same scenario on high levels of levo, mine were up to 200mcg, supervised by Dr Skinner. When I reduced down I would feel even worse, I had no toxic symptoms sweating palps agitation etc etc. In my case I think I was just making Rt3. I don't absorp thyroid meds well due to another drug, but I did make the decision to come off levo altogether. I got so sick of one doctor telling me to up my dose and gp's telling me to reduce. I don't think my cells are good at taking in the meds. I've been untreated hypo for decades and think this is affecting me getting well.
I am now taking Armour and T3, p!us it's really important that you iron is at a good level. I recently was diagnosed pernicious anaemia and low folate. I'm now injecting b12 and am at least getting the odd good week for the first time in years.
Hi just reading through your post my folic level were low iva this the same as folate as my GP said to take folic acid tablets is this correct or should I have B12 injections ?
This is really difficult. If a doctor is treating you it's important to keep them in the picture and to go with their recommendations, although you may also have to use a lot of tact and persuasion to get across your symptoms and needs. They are responsible for you. Obviously, if they see these numbers and believe you are on 75 mcg they will panic. Contary to what hypohen has written I'd be inclined to stop your levothyroxine for 3 or 4 days and then resume the 125? that Dr Skinner recommended. Levothyroxine has a long half-life and your levels will drop very slowly anyway. You need to reach a stable level before any assessement can be made.
The brain is particularly good at maintaining fT3 levels even if serum fT4 is very high. Many symptoms such as fatigue come from brain hypothyroidism, also fibromyalgia is related to impaired deep sleep which can also come from brain hypothyroidism. With high levels of fT4 you will not substantially increase the fT3 levels in your brain but will do so in the rest of the body putting strain on the heart and other organs. I would aim to avoid your fT4 going above 25 and then assess your signs and symptoms. If at this level you still have hypothyroid symptoms with no signs of over activity (slight hand tremor, rapid pulse, feeling 'edgy', vertigo, sweating, weight loss) then it would be reasonable to try liothyronine (T3) or NDT, if at all possible under a doctor's supervision.
The doctor who phoned me (and was very rude) has only seen my once, the two gps I do see are not for budging, and have told me they don't know how to treat me, one had never even heard of T3 and neither of them, NDT ! I did inform my part-time gp last week of my higher dose, he said that was my choice. They only agreed to bloods and a referral because of my mental health, and I think to get me out of their hair !
I didn't take any Levo last night and will see how I go for a few days and then introduce again at a lower dose.
As I say, my gps know Nothing about Thyroid treatment, that is why I am keeping my fingers crossed regarding this new endo. I do so miss Dr. Skinner, he had more thyroid knowledge in his wee finger than than all my practice gps put together. It is finding someone else to trust and who knows what they're talking about. My health has been hell for over twenty years, and when Dr. S. stepped in, I was Alive for the first time since. It felt amazing, so I know that I can feel well again. It has been a godsend having this site. I will post the rest of my results when they come in, and start to reduce my Levo.
I thought I might write to the endo beforehand giving my background, it may help them to see where I'm coming from and save some time in the appointment ?
p.s. My temperature lies between 35.9 and 36.5 I have taken it night and morning for about a month now.
Evey, I've no idea where you are but if you're anywhere near me in north Notts I'll happily go with you. I too lost my job through thyroid problems, but unlike you I have a wonderful husband who has been with me since I was 16 and just on the path to diagnosis of a pituitary tumour. My thyroid has been settled but my new endo has screwed all that up; I'm taking it into my own and my GP's hands by going back to some T3.
Why some doctors and even specialists have such a low view of T3 is beyond me. It's what gave me my life back after just T4, and as far as I can find out, the only "danger" with it is that if you take too much you may push yourself into hyper. As I'm sure you are just as aware as any thyroid patient, you can tell when that happens - the symptoms are clear and easy to treat - just pull back on the quantities. As long as you follow your body properly - I'm currently keeping a brief diary to follow my going back to both Ts. The intervals between seeing endos - at least for me - is 12 months, which is far, far too long for them to keep track, so it comes down to listening to your own body, not over-reacting at every tiny blip, but being aware and able to vary your dose over sensible intervals (2-3 months)
Please let me know if I can help you with the visit - I know how intimidating and condescending these people can be, though I've had some good ones over the years too.All the best!
That is very kind of you to offer to come with me to the endo. Unfortunately, I'm in Northants, so still a bit too far out of your way. I will have to get myself organised now, and get my questions and evidence prepared. I WILL be strong on the day, I Have to be. Thank You for your support, I will let you know how I get on.
I agree with Jim, that you should immediately cut back to 125mcg. It would be helpful if you could retest prior to seeing the endo, your results will reflect the cut in dose after a couple of weeks. Labs usually provide TFTs overnight.
I was overmedicated on 200mcg Levo post thyCa. My FT4 and FT3 were always low in range, not skyrocketing like yours though. I slept all the time, developed Fibro & COPD and a host of other ailments. I was reduced in 25mcg increments every 3-4 months but was almost bedridden by the time I was on 100mcg a year later.
I think the over medication built up in my system and I stopped all meds for 4 weeks. My TSH rose to 107.5 but came back into range after a month back on 100mcg T4.
I've felt so much better since my detox, getting my vitD, folate & B12 in range plus taking other supplements and the addition of 25mcg T3 to the 75mcg T4 I now take.
Evey. It sounds to me as if you've over-raised your thyroid meds in an attempt to make yourself feel better, when it is possible that part of the problem might lie elsewhere. Have you had the saliva cortisol test done to see if you have adrenal problems?
I've got brain fog and finding it hard to concentrate at the moment. As I did not have any new signs/symptoms pointing to over medicating I thought I was doing right, but unfortunately, I was not.
I haven't had the saliva cortisol test done, would the gp do this or would I have to have this done privately do you know? I really am hoping this new endo will know what they are doing and help me. (I've been told it is in my head once too often!) I saw one two years ago, she was head of department and she was vicious and refused to acknowledge I was underactive. Thankfully, she has retired now, so maybe the one I see will have more of a free reign? They are new to the hospital, and I have not been able to trace them online, so will just have to wait and see on the 28th.
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