I've posted on her a few times having trouble with thyroxine stomach/bowle headache no improvement in symptoms at all really struggling no life at all...
My last bloods done in Nov were
TSH... 3.53 ..ranges 0.30-4.50 mU/L
T3.. 2.3pmol/L..ranges.. 3.10-6.80
T4..10.9 pmol/L.. Ranges.. 11.00-22.00 pmol/L...
On sep 23 my TSH was 0.05 mU/L my T3 was 3.1 pmol/L.. My T4 was 13.3 pmo/L
Notes:
. Action: tell Karen to reduce thyroxine to 50gm repeat bloods in 6 weeks:
My TSH on Nov 12 was 3.53 mU/L ranges.. 0.30-4.50..mU/L
Notes on this were: TSH target on therapy for primary hypothyroidism =0.3---4.5 mU/L.
I have just about had enough and contacted my endo today by e- mail putting these blood results in the post and saying how ill I feel stating the bowle and stomach problems headaches feel no better. I've just had a phone call from his secretary saying I've to up my levo to 75mg: firstly I told her I could not do this as I'm having bloods Done in 2 weeks for the new tablets my gp put me on which are Eltroxin as the levo were causing my bowle/stomach problems but that this tablet is causing just the same problems.. She said endo says the levo will not be causing stomach or bowel problems. He is fully aware of my problems with the anti thiyroid meds that I could not take due to me having real problems with synthetic meds... Which was found when I had the camera in the back passage I had server inflammation of the bowl and stomach..he also said my blood levels are nearly in range and I should be OK by now.. Hi is correct because I don't think those levels look good or nearly in range to me..I look pregnant swollen up and tender in bowls... 😩😩😩
Thank everyone
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birkie
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You are very undermedicated and I think you might be alergic to the fillers in the levothyroxine. Can you ask for a different brand? In the past I took Actavis and that suited me but there are others you could try. If they don't suit you ask for NDT because some patients are on it in the UK. People like Sarah Vine who is married to Michael Gove is on NDT I would love to know why she can get it and some patients have to buy it from abroad.
Your TSH should be 1 or lower but to be honest the TSH means nothing because it is a pituitary hormone not a thyroid hormone it is the T4 and T3 that counts and yours are too low and your T4 and T3 should be in the upper third of the range. Do you have any vitamin results to share with us because thyroid patients nearly always have low vitamins. I bet yours are low because of your stomach problems. We need to see B12, Iron and Ferritin, Vitamin D and Folate. You can request your GP to do these tests and then post them on here for members to advise you about them.
Hi lora7again thanks for your reply ❤️ I would agree with you about the levo not agreeing with me I've been on 4 different types on the 5 now.. I am very bad on synthetic meds they found this out at my hospital in 2016 I can't take aspirin. Anti inflammatory meds, antibiotics anti thiyroid meds, HRT, They all interfere with my bowel /stomach i vomit to consultant I had in gastro told me to avoid synthetic meds... When I was having my thiyroid removed I asked numerous times about levo interacting with me my surgeon knew about the anti thiyroid meds making me so ill I ended up in thiyroid storm as I vomited them back so they didn't work.. He assured me that levo would not do this but it is.. My endo disagrees with the symptoms being the levo the same one who disagreed with the anti thiyroid meds making me ill.. I always thought you saw a endo after thiyroid surgery especially has I had graves too.. But I have not been given this opportunity seems like his not bother seeing me as his advice is to up the levo without seeing me.. 😠
I have never been given the opportunity when I last spoke to my gp about my blood results being so bad he said well were trying to get your TSH down to within range and your nearly their at 3.53....nothing about my T3 or T4.... So I'm assuming if I reach 3.5 he will assume I'll be in the Olympics... Again as I said that's not the problem my stomach /bowle pain is a big problem he skipped over this and put my bloods back by 3 weeks so my last bloods were on Nov 12th 2019..my next one's are Feb 4th 2020..my vit levels are what the NHS say are OK but the lovely helpers on here say are very low.. My gp will not do any thing as he says their OK but he has never done vit D so I'm getting that done in 3 weeks to I may need to see about getting supplements as my serum fertin is 26 and the range is 23.00..400.00..my Folate is.2.8 range >2.50ug/L B12 is3. 10 ng/L range.. 197.00 771.00 ng/L as I said he won't treat me with these levels.. 😠😠
I would self treat if he won't help you. I sat in front of my GP balding with my nails lifting off their nail beds and I was virtually bedridden and he refused to help because my TSH was in range. I then contacted a member from another site who told me where to purchase Thyroid S and I worked my way up to 1 1/2 grains unfortunately I had to stop it because my Graves' flared up. I do however think it helped me to go into my second remission. Sometimes we have to take control of our own health if Doctors refuse to help us because of NHS guidelines.
I agree with you.. But can I just tell you what my endo said to me and also put this in a letter to my gp.. He said this:
Looking at her blood tests she has been thyrotoxic since sep 2018 there has been a pretty dramatic drop in T3 from 4th of Feb 2019 to the 7th of Feb 2019 dropping from 36.3 to 5.8 she says she does not take any over the counter meds or thiyroid extract according to her..
When I saw my gp he also questioned me on this accusing me of using unauthorised medication from unrepentant country's.. I have never taken anything other than anti thiyroid meds carbimazol and ptu to which I was servery ill on then in May 2019 I had my TT then put on thyroxine to which I've never felt well on either... If we were treated properly we would not need to search out medication to make us feel well I've not done that but if my gp insists on treating me in the way he is I will tell him that not treating your patient the right way will make us turn to these other country's.. And if certain peoples wife can have NDT then why can't I... 😠😠😠😠
I would not waste my time trying to convince him because he is bound by NHS guidelines and won't help you. Start a new thread asking members if they can recommend a supplier. You could also purchase thyro gold which is cow thyroid from the US just google Dr Lowe and thyro gold and you will see the site. I do my own blood tests through medichecks because my GP only tests the TSH because when the lab sees my TSH is in range they refuse to test T4, T3 and antibodies even though my thyroglobulin antibodies are very high at 4000. I know it sounds scary but sometimes we have no other choice if doctors will not help us .... I had no other choice after being housebound for over 2 years.
I’m sorry you’ve had such a terrible time Birkie. You really deserve for a medical professional to look at your situation seriously and investigate what would be best for you, as an individual, to go forward. This just isn’t going to happen in the NHS though unless you get very very lucky. That makes me sad.
Lots of good advice and help for you from the wonderful people on this forum who have replied above. Don’t give up - try everything you can. Good luck. 🤸🏿♀️🥛
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