I need to keep a note of what's happening and I thought if I do a kind of blog on here, then I have it at my disposal or for anyone else who needs to see it.
After about a year on T4 it was obvious I was not doing well on it. I was even prescribed Eltroxin only so that I didnt shift around with different makes. My feet (tops of feet ie bones) were in tremendous pain, my body swelled, I put on weight and I felt generally quite ill. I had actually felt quite well before being diagnosed other than some tiredness and symptoms of anxiety and panic which I had had for many years. I was even scared of driving or being a passenger and subsequently suffered with depression as my life was in a very narrow window at the time. I also had a weird visual experience where I lost my vision for about half an hour and that was when it was found my TSH was about 6.5. After much research and after feeling like a very old person while taking T4, I sought advice on here and after seeing the name Dr P many times I decided to look into what he can do. I was in tears one night not being able to stop feeling desperate and I looked him up online, only to be aghast that he had an address in my actual small Village. I took that as a sign and emailed his office.
It so happened that he had moved from my Village to Sussex but I still went to see him. I took blood test results that went back 19 years (amazed I got them) and it was obvious to him from those results and how I was feeling that I had been suffering for some years (I had always been told my results were normal). While the TSH seemed okay in these results my T4 was always lower than the bottom of the range.
With his usual type of consultation, we decided to try very low doses of T4 and titrate up etc as well as taking various supplements. In the end we went for trying T3 only. With monitoring, in written form to Dr P and blood tests taken by me through Blue Horizon, I felt I had near enough got everything on an even keel. Before everything went wrong again my levels were near the top of the range T3, very low T4 ( to be expected because of medication) and TSH of 1.4. I was happy with that. I still couldn;t lose weight though. When I mentioned this to GP he said to try smaller portions. I was very angry about that comment. We eat extremely healthily especially as our daughter has type 1 diabetes. My whole family are slim except me.
However previous to and during those near perfect results I had experienced a very strange wheezing asthma type experience that I had never had before. My Doctor tried to tell me it was anxiety because I have records of that on my files although I had never suffered again since trying T3 which I have been taking for about 2 years. The results I have just posted above were near perfect, it could not have been to do with that. It happened a couple of times and I even had a heart scan incase I had had a silent heart attack. All came back fine apart from a slightly narrowed artery(stenosis?) which was apparently nothing to do with the "breathing thing" which is what I call it and in the end my GP reluctantly agreed it might have been a seasonal allergy and I was prescribed anti histamines.
Any way, I carried on with the T3 at the levels of around 50mcg per day taken in parts of doses. I have to admit it wasn;t 100% happy with the self prescribing of T3 with no immediate guidance and have often wondered about seeking the services of an endocrinologist through my GP. The breathing thing had happened in February. When it happened again in April/May is when I had the heart scan. I also spoke to the doctor about an impending and exciting travel experience I was about to embark on. I was going to a wedding in New York on my own. In the meantime my family would be in Tuscany and I had to get there after the week in New York. It would be a tortuous journey. Im a bit scared of flying and I had to fly from New York to Heathrow and then catch another flight to Pisa from Gatwick. The timings were imperative and I was nervous about it. My GP prescribed some atenolol. He said it would be good to keep calm with. After taking it, my Personal Trainer doubted that they were any good for me as they affect metabolism (regardless of having great levels etc, I was still and am still overweight). I also looked up Atenolol online and it mentioned something about affecting absorbtion of thyroid hormones and conversion of T4 to T3. I went back to my GP and queried this. He said it was rubbish and not to worry. So I carried on. I started my trip and I noticed my breathing was a bit laboured. I arrived in Tuscany and my family queried my breathing also. I was also profuseley sweating from my head (of course I put this down to menopause symptoms). When I returned home I decided to reduce my Atenolol to half dose and see if it made a difference which it did. However, maybe by soon to be discovered new T3 levels were something to do with it, I don't know.
At this time ie end of July I did my usual self testing and was surprised at my new levels. T3 was 12.6! top of range was 6.8. It had never been above about 6. My TSH was 2 though. I decided to reduce the T3 down to 37.5mcg and just assumed it was building up too much. I had also asked my GP to help me with monitoring ie that my blood tests could be done that include T3 testing because although I was happy dealing with the acquisition and guidenace of T3 with Dr P, I would like to think the monitoring of levels etc could be with the doctors surgery. He refused and said "he wouldnt know how to read those results"! What!!!! Im not a doctor and I know how to read them. Obviously no help coming from that direction.
I have now taken further tests and after halving my T3 my Free T3 level was 22.5!!!!! My TSH had also raised and was now 6.8. This was not good. This was Saturday. I could speak to nobody about it but stopped taking the T3 on Sunday. I called Dr P office and his assistant was also surprised. She said she would speak with Dr P but that I should take no more T3 for a few days, that I would feel bad but to start taking it again in very small doses titrating up again until I felt it was too much. Now, I have to say that I cant say that I had any symptoms of having such a high T3 so it would be difficult to tell if I was over again. Maybe thats because my TSH is so high? It suddenely occurred to me about the Atenolol use, I explained this to her that as soon as I was taking that, my levels seem to have gone haywire. She said she didn't think that would cause the problem. I have not changed brand of T3 so it wasnt that either.
Last night I looked back over all my results and noticed that I had queried the atenolol issue when the July results came back with the blood test doctor and he commented that Atenolol can affect the bodies absorption of thyroid hormones. It was also noted that I had very high antibodies indicating Hashimotos. I have never been told that during any GP testing in the past. I know Hashimotos can be quite common but I believe if you have that, it indicates you have an auto immune disorder. We have auto immune disorders in my family so Im not surprised. My daughter has type 1 diabetes, my aunt is hypothyroid and coeliac.
I am concerned about my course of action here. Surely I shouldn't just stop T3 in such an immediate way but also, it had to be done. I don;t know how many days will take me back to levels they should be. Im worried because I head to New York again next week and I don;t want to feel ill. I continue to worry about the breathing thing which didn't seem to occur while my T3 levels were seemingly so high. I don't want it to happen again.
So, today is Day 3 of not taking T3. I still feel okay albeit a bit sleepy. I am going to keep a record on here of how my progress goes. I have made an appointment with a private and recommended endocrinologist for January in the hope he will study my case and will refer me to himself on the NHS.
I dont know whether I should go to my GP now and show him the results which have occurred since taking Atenolol but Im scared he'll just try to blame the T3. I know I can't just stop taking the Atenolol and I know for a fact my blood levels have only changed since being on it. The only other thing that has changed is me not having gluten. I decided to stop all gluten because it can affect absorbtion issues but surely not to those levels. Presumably the high TSH is indicating that my body isn;t allowing the T3 to go into the cells anyway. For the last month I have also been on a Very Low Calorie Diet and lost a stone in weight. I assume that didn;t jolt my body into not absorbing T3?
Having such a high T3 result really scares me but I have no symptoms of going into hyperthyroidism. My TSH is high, no weight loss, no anxiety, no rapid heart rate. I am extremely depressed though. I suppose Im worried about toxicity and in fact apparently Atenolol an be used for thyroid storm so maybe they are causing the problem but keeping the symptoms away at the same time.
Anyway todays blog over . I told my husband about this just incase something dreadful happens while reducing the T3 or even once I start taking it again. He has a record of what has been happening here. It can only be related to taking the Atenolol surely.
I hope you enjoy reading this. You don;t have to comment but any comments are welcome. I am really angry that all the years I suffered with anxiety and panic, interfering with my life, interfering with my peace of mind, was all because I I hadn't been diagnosed correctly. All the time I went to the doctors (not excessively so but at least once year) about feeling so bad and excessively anxious and with inability to lose weight and every blood test I was told was normal. I was on anti depressants for a while, usual story but refuse to take them now. I walked around constantly light headed during that period. In fact my T4 was so low that the testing centre added LOW at the side of the results. I have lost all faith in them and determined to get back to a good level again.
x
Latest results after dosage change
Graves disease treatment
First Post on Thyroid
Endocrinology appointment update
