Well following on from my post 2 days ago with my latest blood results my GP called me. This is the GP that after my March results (TSH 7.54 FT4 15.8 & FT3 5.6) said he wanted 1 more consecutive increase then he would treat before the guidelines of TSH at 10. So after my results on Tuesday I rang and booked a phonecall. He just called me and this is how the conversation went.
He said 'ok so there has been another rise'. I said 'yes, this TSH has been increasing since 2013. T4 has been a little up and down during that time too'. I had to again tell him TSH was 4.9 in 2013 (0.35-5.5 on NHS lab). T4 11 (7-17 on NHS labs). Then last summer TSH was 5.35 and FT 10. Now as TSH has climbed T4 seems to have gone up but in January I used Blue Horizon and their ranges differ to the NHS. These latest results were all done private as I gave up on nhs testing. My TSH in January was 6.54 (0.27-4.2) FT4 14.7 (12-22), March TSH 7.54 FT4 15.8 and this week TSH 9.28 and FT4 15.76.
My Gp after hearing all of that and typing it down despite having copies of all my results said 'I want to test your antibodies'. I said 'Well I asked you to do this last year but you refused, I have since been private for bloods and tested my antibodies twice and both times normal and you do have the copies of these results'. GP 'Well I think we should wait another 2 weeks, re test the TSH and antidbodies on the NHS and see if anything has improved'. To which I replied 'You told me just 1 more test and you would treat me as I am so unwell, you told me to wait 4 weeks back in March and I have waited 10 to see if anything changed and it's shot up to 9.28!. I am ill, I am beyond fatigued, weak, anxious, upset and tearful, dry skin, losing my eyebrows, body temp all over the place, panic attacks occasionally, extreme muscle weakness in my legs and arms and the worst being I can't live my life. I am crashing and ending up in bed if I make the kids tea and do yoga on the same day! I can't even go to more than 1 shops without crashing badly afterwards at home. I am developing agoraphobia because of this. I cannot carry on like this, a dog wouldn't be left struggling like this! I am a mother to 3 children, I have no family support as my husband works long hours. I want my life back so I can be a good mother to my children, I am missing out on so much feeling this ill. I am not just tired!'. To which he said 'Ok, lets start a trial.' lol!!
Now this is the best. He said to me 'you don't have antibodies though, that is strange, that is why I suggested we wait to see if things got better as it's a good sign you don't have antibodies'. Now this is the second GP in this practice to say to me you can't have hypothyroidism if you have negative antibodies. Seriously, what medical school do these people go to????? I am right aren't I that of course you can still develop hypothyroidism without having hashimotos? I told him my mother doesn't have an autoimmune condition yet she has hypothyroidism.
This has been the best GP out of a bad bunch and it was him who said he felt for me being so ill and he said in March even a slight increase next test and he would treat me. Now I have a result 0.8 off the NHS magic 10 he was trying to make out I was just anxious and depressed. Absolute madness. He said 'are you just feeling tired?' No!!! Tired?? I wish i just felt tired.
So I am starting a trial of levo as of tomorrow. I am not sure of the dose but he said trial dose for 8 weeks then a blood test, and he will be doing my antibodies. Grrrrrrrrrrr! Can antibodies change and turn positive? i have had 2 that were very low and completely normal.
Sorry to post again, I am beyond frustrated. I feel awful. I feel my anxiety has gone haywire since having this the last year but the last 6 months since my symptoms got worse my anxiety has been awful. I seem to just be so scared of everything and not thinking straight due to how exhausted i am and brain fog. I felt he was trying to say that how I felt was all just depression because he also said 'well our energy drops depending on our mood that day'. I score 7 on a depression test lol. I am not depressed. I am tired and wired lol! and agoraphobic due to losing all confidence in myself as in shops or public places I feel I will pass out I am that poorly.
Can anyone reassure me about starting levo. I am worried sick as I get really bad anxiety about starting medication incase i have a bad reaction and end up in hospital but I have no choice but to take it if I want to get better so I am feeling rather anxious about this
Thank you for your continued support.
Julie x