Hello, and first can I say, thank you so much to everyone who replied to me. The information and help I was given here was invaluable at appointment today.
As life would have it the locum who I was expecting to see was doing the baby clinic and the GP who I told seven weeks ago that I wasnt confident that he could give me cortisone injections into my shoulder with accuracy, called me. When I started to discuss my blood tests and thyroid levels he said yes your thyroid is fine. I Immediately told him I had been in contact with thyoid UK and they were not fine and quoted him the levels which they should have been. He said he wouldn't think of treating until the TSH level was 10 and of course to this I said by that time I would be on my knees. I also was also able to tell him about the connection to frozen shoulder and foot pain and muscle weakness, and the other symptoms like coldness etc that I have.
I said to him that I assumed he was aware of the connections, he said of course, though I think not. at that point I said then he should have no problem giving me a trial. Boxed himself in there I think. He wanted to give me 25mcg and again I said that I would be setting myself up for failure at that level and asked for 50mcg. He said it may not even help me and could swing things the other way, but I said we can have bloods done to make sure.
I know without your help I would have had a battle on my hands and probably come away with nothing. I will post when I see how things are going.
Thank you again. Potter
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Well done— you did brilliantly there to stand your ground.
I was just reading through your previous post. I’d forgotten about the foot pain I used to have. I could barely walk when I got out of bed in the morning—how could I have forgotten that?? But I had. And like you, my TSH wasn’t so very high when I started on treatment. Every now and again I have a mad five minutes and consider stopping my thyroid hormone replacement because “I shouldn’t be on it” according to most doctors. But it’s made such a difference. I used to feel half dead most days. I remember noticing within days of starting thyroxine that I could lift my arms above my head effortlessly—and realising it had never previously occurred to me that it should feel effortless!
Hello Jazzw, thank you. I was really pleased especially as the GP knows I have no confidence in him. I think going prepared is so important. I really hope this helps me even a little and if it could ease my bone crushing feet pain and vice round my ankles it would be wonderful.. I am so glad the treatment has helped you and life is easier. Kind regards Potter
Hello Nanaedake, thank you. My memory is awful so I make notes before I go. I write down little headers, just a prompt. I always get copies of any tests and blood tests and take a copy in to appointment. It is awful you have to prepare yourself for a doctors appointment, I mean we are only there because we are ill but it makes a difference. I hope you do well at your next appointment. Kind regards Potter
So glad your appointment went well ... now for better health. Please keep in touch as you may need to have a few more battles on your journey - it can be a bumpy ride at times 😊 Did your GP tell you how to take your Levo ?
Hello Marz and thank you so much for your advice. I was able to quote the levels and dosage because of you. No he didn't say how to take it but pharmacist told me to take it an hour before food or drink. Took the first one at 7.00 this morning. Went back to sleep and was woken by massive spasms they are so painful and my partner has to use all his strength to get my heels to the floor. Takes so much out of me. I hope maybe this will ease these as well. How do they come up with tsh level 10 when the top range is 4.2 I can't get my head round that. Another battle, and you shouldn't have to. I will let you know how I get on. I am glad you are enjoying good health and lovely life in the sunshine. Thanks again, Marz. Potter.x
We sometimes think these numbers are plucked out of the air ! When you have time you may wish to look at the post from diogenes yesterday about the e-book with the up to date research papers about the thyroid that he was involved with. He is Dr John Midgley - as mentioned in the research papers.
You will read that there should not be one size fits all. You could choose to Follow him so you receive his updates and will continue to know more than your GP They say it can take over 14 years for good research to reach the frontline !
Hi Marz, just noticed this post of yours to me, thank you I will look at these research papers. Always trying to find out more. You are very good at research and passing on so much information and good advice. I am a bit drained from yesterday and today. Feet in a vice, driving me crazy. Hope you are having a lovely day. Potter. x
Having a peaceful day here in Crete thank you ! Guest House and Studio guests all behaving !! Both lots leave on Saturday so it will be a hectic weekend !! Might need extra B12 & T3 😴😴
Try to take it easy and only take baby steps. I too suffer with cramp/spasms and my shoes are my feet !! I lie in bed reading with my shoes/sandals on until the last minute to reduce the niggling nerve pain. I know mine is nerve damage after spinal decompression surgery in Germany in 2007. Back to yoga on Monday after a summer break ... onwards and upwards. 😊
You are making me smile Marz. I am visualising you in the sunshine, I am freezing cold although the heat is on. I am not sure if my cramps and spasms are due to the b12 neuropathy or my spine problems. I know I need to clear my mind, I think I might try some meditation techniques. Like you I keep my shoes on all day. Enjoy your yoga and summer break, you deserve it. Kind thoughts to you and thank you. 🙂 Potter
Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine
Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. (Though it is the only one for lactose intolerant patients)
Blood should be retested in 6-8 weeks
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If not had vitamin D and ferritin tested you need these
Vitamin D via NHS postal kit £29 if you don't want to ask GP
Hello SlowDragon and thank you so much. Yes I took it at 7.00 this morning. The brand I was given is Teva, are there other choices and does this one not work well and why, and how do I go about getting a different brand. I will make sure I take vitamins and any meds later in the day. GP did say to have bloods checked in a few weeks and I will ask for early app. The surgery did test vit d for me. It was 80. Thank you again for all your advice SlowDragon. Kind regards Potter.
Thank you SlowDragon. I am in panic mode. Just about to go to chemist and see if this can be changed. I really can’t do with any complications or feeling worse and will be afraid to take any more of these. As I said to Marz if I go back to gp on a brand issue he will throw me out. Will let you know how I get on. Thank you so much again. Potter
Hello shaws and thank you so much. Yes he really boxed himself in when he said he new about connections. He doesn't look for connections, he is a one symptions one treatment gp. Strictly by the protocol, doesn't think or consider, never looks at you and types the whole time. I was so pleased to have so much information and can't thank everyone enough. I hope you keep well. Kind regards Potter
Just an afterthought ... it was over a year ago we started talking on the PAS forum and again a little while ago. So I was so pleased for you that you made the jump over to Thyroid UK. I often read of members on the PAS Forum with thyroid sounding symptoms in addition to B12 Deficiency - am currently trying to encourage another - so I am wondering if it would be appropriate for you to post something about your journey with your Thyroid along with of course your other conditions. You do explain it all so well. It may just help others to take a deeper look rather than relying on the Doctors saying - ' your thyroid is normal ' ...
I absolutely will post up on the pas site. Marz.I will leave it a week or so ,so I have some idea how this is working. SlowDragon mentioned teva not a great brand for some people so not sure how to get round that. Does it just not improve symptoms or make them feel sick. I suppose I will have to give it a little while. I am so pleased you suggested joining this site. As I have said, the advice and information was invaluable and people so kind and responsive, as are those on the other site. People just wanting to help each other. I will keep in touch Marz. Thanks again. Potter x
I think some people do not respond well to changes of brand - often due to fillers. Teva has been mentioned several times here so monitor yourself closely with a few notes on pulse/heart rate and most importantly how you are feeling. 😊 Also keep asking questions so you can be re-assured ...
Hi Marz, I have been googling Teva brand and poor reviews, really bad some of them. I am desperate for this to help me and don't want to start off with a poor medication. I will go down to chemist but they may not take back. Clear Pharmacy Group so maybe all they carry. If I go back to gp on a brand issue he will throw me out. Can you recommend a good brand even one I could buy on private prescription. I just can't face anything making me feel worse. Thank you again Marz. Potter. x
Hello SlowDragon, panic over, pharmacist is changing to Activis, I hope it is suitable. Will get it tomorrow. Thank you so much again for information and help. Kind regards Potter.
Hello Treepie, thank you so much, I really hope this helps me as I feel worn down. I am really pleased your condition has improved by your treatment and you continue to keeep well. Kind regards Potter.
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They say it can take over 14 years for good research to reach the frontline !
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