I have been taking my hypothyroidism in my own hands for a couple of years now but Im fed up with the responsibility and I want someone to take the pressure off for me.
While I have been happy on T3, I am still not perfect in any way. I had been having appt with Dr Peatfield and followed his advice. When I asked my GP if he could help with the blood testing alongside he refused.
I have been having private blood tests done through Blue Horizon and my last one was very strange. I still don;t know if there was an error in the testing but I had to make a decision following those results which involved stopping T3 altogether and then titrating up. I am now on a mere quarter of what I had been on and I feel dreadful. There is nothing more I can do but to see an endo privately and I have made an appt with Dr Paul Ryan which is at the beginning of January.
In the meantime I shall go back to my GP with the strange results and see if he will refer me. Basically the FT3 was around 22 in a range where the highest point was 6.8. T4 was very low which was to be expected but TSH was 6ish also. None of this makes sense. I am told Dr Ryan is fairly open minded about treatment and I think his advice would be worthwhile.
I am getting all my old hypothyroid symptoms back which includes dreadful leg pain. I have just returned from New York where I found it difficult to walk and I was often breathless. I just dont want this responsibility of sorting it out myself anymore. I look really tired, feel tired, can't work out if jet lag is at work although going to New York is not a rare occasion for me so know my normal limits.
If anyone cares to PM me with advice on Dr Ryan, what kind of information I should take to him etc. I am going into the menopause also which doesnt help and I don't want to confuse matters.
Sincere thanks
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Numberone1
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I have no knowledge nor information on Dr Ryan but I wanted to say the I understand the feeling of frustration of trying to work it all out for yourself. I did all of the research myself, I knew more than my doctor on the subject so I had to change docs. I remember crying in the new doctor's office that I knew a great deal about the subject and just didn't know where to go from here, I just needed someone with a medical background who would work with me and synthesize the data we had both acquired. But no such luck. The second doc was younger and less experienced and so consulted with my old doc (both in a large medical facility) thereby slopping over all the same misguided nonsense I had just lived through. But I had made incremental progress, I got on Armour and off that toxic Levothyroxine. I just have to convince her that I am now simply under medicated. Yes, I too recognize the pains in my thigh muscles and knees as the old hypo pains of too little Levo. I fixed this by taking an extra quarter grain of Armour just before lunch. However my new young doc wants to lower my dose so I anticipate another big argument brewing. Gosh it is all so frustrating.
I hope your new doctor helps you, I wish I could be of more help.
There are many with Hashimotos that don't feel well, on any dose and any type of thyroid med, because having an autoimmune condition and not addressing it, keeps them feeling ill. I am one of these people. I know i won't feel well, until my hashi's is gone.
Levo and Synthroid gave me leg hip and arm pain. It all stopped when I went on Armour.
Check out carrie Vitt's Deliciously Organic website. Her cookbook very basically explains how she put her Hashimotos into remission through a grain free diet. There are others that are similar but she explains it all well
i signed up for Dr. Isabella Wentz's emails, she put hashi's into remission, thru functional medicine and tells you how. I am also seeing a functional medicine doctor
I haven't tried it yet but lots of people follow the AIP diet but even this has some things that some of us may have a problem with ( cause histamine reaction) so need to be cut out too. Lots of stuff on AIP on google etc . hope this helps
Hi I don't know Dr Ryan but good luck with him. Blood tests are just a guide and nothing more, it's what is reaching the cells that counts. You said you were still having problems on T3 alone but now feel dreadful, you obviously need the T3 and perhaps a little T4. Some people do well on NDT but some don't. I really don't. I have no gland whatsoever and if I took NDT I would be bedridden again. I take 75 mcgs T4 and 37.5 T3 and my Belgium doctor is happy with this even though I have a TSH of 0.01. She listens to the patients heart, pulse rate and also muscle testing to see how much thyroid hormone there is in the cells and this is the way you treat and diagnose hypothyroidism, not just by looking at the bloods.
I have some documents you might want to take with you to Dr Ryan so if you private message me I will give you my email address.
Thanks and Merry Christmas
ps there is little hope with the NHS in thyroid matters. Those doctors and endos work under the same guidelines so I'm afraid unless you go "outside the box" you will continue to suffer. You may find a doctor that will ignore the bloods and treat you but I doubt he will keep his job for very long.
Like you I have no gland I have been on armour for many years but it stopped working for me so I also now take the the same dosage as you 25 yaers on and I am still battling with doctors and I don't think I understand it anymore than I did 25 years ago what I do know is my life is a merry go round of shall I take more or less levo is something I don't want to take but I would do anything to be well. Also I believe that without a gland you need both elements .
Hi yes it is a merry go round but there is more to getting the metabolism balanced than just thyroid hormone. Ferritin levels must be checked as if the iron is low then you won't get a good conversion, also the adrenals must be balanced. I go to Belgium now to Dr Hertoghes clinic, they are very good. If you want anymore information then send me your email on the private messaging service. I might be able to help a bit more. Happy Christmas
Like you, I did not do well on only Armour, or only Synthroid. I take a combination of 75mcg Levo in the morning, followed by 60 mg Armour (NDT) at noon. It works for me. Everything else I have tried leaves me aching and fatigued.
Hi, sorry you are having all these problems. Are you seeing Dr Ryan in the Kent area? I go to Dr Acosta (Acosta-Gomez) who works with Dr Ryan if it is the same one. I have heard good things about him but I cannot fault Dr Acosta she is lovely and did lots of nuclear scans (nothing to be worried about I almost went to sleep during one of them lol) and found loads of problems with my thyroid, nodules, Hashimoto's, the list goes on lol She also discovered I had high calcium and had an adenoma on one of my parathyroid glands. I had half my thyroid removed together with the parathyroid gland which luckily was on the same side as the side of the thyroid with most nodules. My calcium went down immediately but they never found the gland as my thyroid nodules had spread so much it had enveloped the parathyroid. I had only just gone underactive but believe I have had Sjogren's and Hashimoto's most of my adult life if that is possible as I have had many many health problems, stiffness and pain, exhaustion, severe migraines which did not respond the three three preventatives I was taking amongst others. I have since been diagnosed with Sjogren's and Fibromyalgia and suffer severe pain and stiffness on a daily basis. I also have lots of other things going on too like asthma IBS, etc. I have lost two jobs and many relationships and friends because of my health and the above thyroid problems only were diagnosed in 2010/11. I cannot work but my ESA was stopped in June, 2014 and have not had any money for food since then. I have another 1st tier tribunal on 25th January 2016 but quite honestly if I don't win that I will lose my house. My savings are almost depleted. I feel under so much stress at the moment I don't know what to do and cannot handle the pain and the mental strain ( I suffer chronic depression not surprisingly lol). Wish I could get it over with now but will have nowhere else to go. Sorry about the tale of woe but I wish more research could be done in the UK regarding levothyroxine and it's negative effects, the brand I felt suited me better has been discontinued. I hope you get things sorted soon.
Thank you for your reply. You sound like you have gone through so much more than me. I have done all I can to stay normal. I go out when Im too tired to, I pretend Im full of energy when Im not. I just try to outdo everything thats happening to me. New York when you feel without energy was one of the most draining experiences but if you were to see me you would not guess I had that problem.
I thought that if I see Dr Ryan privately, who I believe does consider T3, I might at least get a way forward. I am hoping he will write to my GP and advise him how to go ahead on the NHS
Good luck with your appointment with Dr. Ryan. I spent many years telling doctors how I felt with no outcome I suppose because I wasn't hypothyroid they didn't spot anything. My dear old Mum was sure I had thyroid problems when I was in my twenties and I am now nearly 62 she was the only one who supported me fully as she could see how poorly I was sometimes. I too dragged myself around for years when I was exhausted and felt to ill to do do anything, trying to get to work when I felt so ill, but now I just cannot do it with all my other health issues. A few years ago I was looking at retirement at this age but unfortunately the DWP do not recognise that some people between 60 and 65 just become too ill to work and want to believe that everyone is 60 but feels 30 and is able to do the same as a 30 year old. Just doesn't happen.I have even been retired on ill health grounds from Permitted Work, but unfortunately at my WCA the nurse who saw me just noted that I had left the job not the ill health retirement. Have a good Christmas and New Year which i hope will bring an end to your health issues. x
Hi. Should I not be basing my T3 on the blood test results? I have done so based on only the Free T3 because surely that indicates whether you are taking too much T3? Im not sure. Can you advise?
Good Luck. You say your FT4 reading was very low and your FT3 reading was 22. I wonder whether they got them the wrong way round. FT4 = 22 would be a top of range but not over the top for many labs, and a low reading like between 5 and 6 would be a normal FT3 reading in many labs. Just an idea.
Those figures and your reading of them does make you wonder don;t you think? I hadn't thought of it like that. Blue Horizon assure me that all their readings are accurate but I wonder if the figures were transposed inaccurately? It has basically ruined my time in the US and now while Im fiddling about with medication which is annoying. Well done for thinking that.
When you are taking T3 alone your thyroid blood tests are going to be wildly inaccurate and not to be relied upon when you are adjusting your doses.
Instead I would rely on your body temperature and pulse rate . Also you say that you are menopausal-as all the hormones are interactive I would advise you to have your sex hormones, estradiol, progesterone and , testosterone measured on day 21 of your cycle if you are till menstruating, as, if your hormones are out of balance it will be very difficult get the correct dose of thyroid. You might also want to see how you feel on NDT or perhaps add a small dose of T4 to your T3.Have your antibodies checked and also iodine, ferritin,B12 and folate levels.
Don't forget to supplement with selenium, zinc, magnesium and tyrosine
The other reason that it is difficult to get the correct dosage is when you adrenals are dysfunctional-so get a daily saliva cortisol testing at 8am, 12 midday, 4pm and 8pm
I hope that this helps and you have a useful visit with your endo
So do you think that even the T3 figure is inaccurate because if thats the case, its a waste of time doing any blood tests isn't it? Do you think every one of those figures is inaccurate? I have had the antibodies checked and they are very very high. Basically an autoimmune disaster waiting to destroy something else now.
It shows different levels and what they mean. Anyway looking at it, an off the scale T3 and normal T4 indicated pooling. This combined with a high TSH looks like the T3 isn't getting into the cells. If you look at Dr David Clarke on YouTube hidden causes of low thyroid symptoms he explains it very well. There are 25 short videos which all quite short and explain it well. Hope it helps
Numberone1... maybe this might help explain your high t3 levels? These links may explain it better than I can. You may have R t3 going on due to low iron or low cortisol. This is where the body is storing the t3 instead of it getting to your cells. Going into menopause isn't helpful since the adrenals use natural progesterone to help convert T 4 to T 3 and our progesterone production drops like a rock for as early as 10 yrs before actual menopause. There may be UK sites that are as informative and helpful as the this STTM site is in the states. By the way, many folks on the naturalthryroidhormones group I belong to are self-treating their 'pooling' etc since most docs are useless and never heard of pooling.
did you take your meds just before blood test...if so...that would explain the high t3 hence I take at least 15 hours before test ,if not....you may need a combo t3 t4 med.....
I am in Australia, went to a new gp/natural therapist who specialises in thyroid problems. He was brilliant!! He said that blood tests only give you what is in your blood at the time, they don't necessarily tell you whether the body is using hormones properly. He says to go by how you feel. You feel awful. I have been taking advice from this forum and find the information here is right on what he gave me today. He will be monitoring me and I am going to take long acting t3 with small amount of t4 medication. I am so happy to finally have found someone who looks at the body wholistically. Good luck with getting back on track. Listen to your body. all the best, it is such a battle and who has the energy for it?? yet you must find it and keep going.
Yes I feel awful by not taking the amount that gave me such high levels of T3......not sure whether its right or not. I don;t want to be damaging something by having all that T3 floating around even though I do feel well.
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