Hi, I was originally put on Thyroxine only back in July 2009. I remember the exact date as it was my birthday lol. I began on 25mcg and this made no difference and was also severely anaemic and on ferrous fumerate of 210mg 3 x daily. The anemia was due to endometriosis, fibroids and I had non stop bleeding every day for 3 years with flooding ect and in Nov 2011, I had a total hysterectomy. At that point in time, I didn't know what the readings were. I then increased to 50mcg around 6 months later, and then to 75mcg. After looking on line and reading more and more about hypothyroidism, I began asking for readings. Started taking readings in Feb 2012 which are as follows:
T3 Not checked
On this I still had symptoms. I didn't question it and thought that in time that things would improve. My next results were:
T4 Not checked
I was having tests done quite often as a result of moving house every 6 months as I was going where ever work was so as I would end up out of gp catchment areas then end up registering elsewhere.
The next results I had were as follows, and the gp was not happy about doing my T3 bloods. Though, as I said I was going to go private, they reluctantly did the T3 test which produced the following. The gp also did not care about ranges and said that thyroxine would be reduced on blood results.
I then moved house again, and changed to another gp practise who were really good. All the gp there were very supportive and one let me increase my thyroxine dose to 100mcg. I had increased it myself for a few months and told them that I had did this and was feeling a lot better. Also, I was in the process of being referred to a very good thyroid doctor in England but they could not take NHS, however, I could have gone private. Being in part-time work, private wasn't an option, so agreed to be referred to an endo in Cardiff as I was living there at that time. Also, at this time, I was craving coke and drinking it in the mornings before I had even left bed, so that the caffeine would keep me going for work. Was taking the thyroxine with water first though. I looked up coke cravings on line and saw that it suggested calcium deficiency and also I was still plagued by extreme fatigue. In my next appointment with the gp, they took bloods for parathyroid and found that vit D was extremely low and put me on calceos 2 x daily. Also, at this time I was referred to the hospital for a Short Synacten Test which resulted at 527 (endo says this is peak?)
T3 Not checked
After seeing the endo I had bloods taken, which produced the following result:
Looks like the thyroxine increase to 100mcg alone had increased my T3 levels which were 3.6 before. Endo gave me a trial of T3 liothyronine 10mcg which produced the following result
Thyroxine 100mcg & Liothyronine 10mcg
Initially, I felt better, then worse as T4 has dropped from 21 (was starting to feel more normal when it was 21, though think it could have been raised from that).
Saw endo again and asked for an increase of T3, which was agreed to and it increased to 20mcg which, I am currently taking, however, endo said to decrease thyroxine to 75mcg. Did this, but only lasted a month as symptoms recurred. Slowing down, more hair falling out (though hair stills fall out and has been falling out for years). Also, severe constipation, IBS and first degree piles and bladder leaks (am under a different hospital for these, though think there are links with thyroid. Also, very dry skin probs (been taking Primrose oil and omega 3,6,9 for years - does not improve skin, but eased PMS and helps after hyster as still have both ovaries). Also, I had 2 ovarian cysts which were surgically removed - one back in 1999 - which I have been told are linked to thyroid. I have a very strong family of hypothyroid and other autoimmune conditions. Biggest issue, I have is fatigue and bowel/bladder problems, brain fog ect which interfere with work ect and also 'growing pains' in legs.
Anyway, I could not function on 75mcg thyroxine with the 20mcg liothyronine so increased it myself back to 100mcg. Then, I went back to gp in area where I currently live (no longer in Cardiff) and asked for thyroxine script as ran out. Gp refused to give me any thyroxine at all, and was horrible to me as he was running an hour late, and told me that it was down to patients like me. I left there in tears, went straight to reception and asked to see a different gp, which was granted. The other gp was very good and listened to me, however, was straight out of uni and work was being overseen by one of the partners who I had already seen). This one requested bloods which gave the following result:
Thyroxine 100mcg & Liothyronine 20mcg
However, was given script for thyroxine.
Was so upset by previous gp that complained to the practice and they said to book in with one of the other partners, which I did. Saw doc and took bloods for B12, folate, ferritin, gluten allergy due to strong family history of various anaemia's. Tey didn't do thyroid bloods, though had asked for the thyroid anti bodies one. Gp did say that, that one should have been done when first diagnosed.
Here's the results for the others:
B12 serum 556 (range 180 - 900)
Folate 6.2 (greater than 6.2)
Ferritin 217 (range 15 - 300)
Gluten 1.7 (range 0.0 - 10.0)
GP said that these were normal.
However, on looking at info on Thyroid UK, I said that B12 should be upper end, more than 500. I am borderline with B12 in my opinion and on the research I have done and tried to show him the research I had done, that thyroid patients would be better at upper end of range or elevated but he said I would not get treated until it dropped to say 194. My mum has pernicious anaemia, so do most of my family and I am trying to prevent it. Am also vegetarian. Anyway, I then mention, the B12 Active test and have sent off for the kit to have bloods done for this, as this test is more reliable and said that I will need a gp letter for this test. Gp responded by saying that if the test was so reliable, it would be on the NHS. Tried telling him that it in the process of being rolled out all over the UK - it may then become available on the NHS, however, at mo its not, though its not that expensive either. Gp is not helpful, I should have told him that many of the best cancer treatments are not available on the NHS and should be, but held my tongue.
Sorry for bombarding with lots of info, but this is where I am at present. I did take advice from a private doctor who said there was room to increase thyroxine to bring my T4 levels up - which I agree with. Am only working part-time after being out of work for 6 months due to redundancy so going private for meds is going to be a real struggle, so am trying to find a way around this is poss. Maybe reducing T3, would allow me to stay on 100mcg and get my T4 levels up. x