I ask because I tried a short jog and crashed after, I had been feeling pretty well so thought I would start the couch to 5k (I used to run a lot) my latest results were
TSH 0.226 (0.27-4.20)
Free thyroxine 20.55 (12.00.22.00)
T3 4.5 (3.10-6.80)
I have hashis antibodies are coming down I'm gluten dairy free and taking selenium all my vit levels are good. I would like to jog at least once a week at least but it still doesn't seem possible? I have started to look at thyrogold but am unsure as I feel pretty well if I don't exercise I'm on 125 levo take it on empty stomach at least 1 hour before food/drink
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Clairewalker751
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Your FT3 isn't even mid-range. Most people need it up the top of the range to feel well. You're not converting very well, so some form of T3 would be a good idea - especially if you want to jog.
Thank for your swift response grey goose!! Having been an avid reader of this site I don't fancy my chances of getting T3 from GP? Have you any views on thyrogold? What's optimum for T3? And how if at all could I improve conversion?
I haven't tried Thyrogold because I need to be on T3 only, because my conversion is very bad. I also need a high-ish dose of T3, so would need rather a lot of Thyrogold to get enough T3 - which would not only work out very expensive, but would also leave me with a lot of unconverted T4 in my system - which is a problem I have with all types of NDT. And that could be a problem for anyone who doesn't convert well.
However, a lot of people do do very well on it. I think quite a few people on here take it. I do think it's expensive, compared to some other NDTs, but one advantage has to be that you can pay by Paypal!
What is optimum for FT3 is the level that makes you well. You can't just go by blood tests and say it has to be this level, no higher and no lower, it has to be at the level you need it to be, whatever that is. But, I would imagine, higher than yours.
There are lots of things that can affect conversion - not eating enough is one of them! Low-calorie diets badly affect conversion. So do low levels of nutrients, so it would be a good idea to get your vit D, vit B12, folate and ferritin tested, to make sure they're optimal - not just 'in range'.
Apart from that, high or low cortisol will affect conversion. And, for some people, having Hashi's will mean that they are bad converters. You can't always fix it. But, just trying to work out what's causing it will take time, during which you will continue to suffer. So, my opinion is, start taking T3 first, and try and improve your conversion after, if you can. Life's too short to suffer like that!
Thanks again greygoose I don't calories count have a high good fat/protein diet and eat mountains of fruit and veg cook from scratch basically and AIP diet. What's the best way for me to source T3 I really don't know where to start and whilst I feel much better than I did not being able to enjoy some physically activities really gets me down.
Write a new post, asking people to PM you their trusted sources for T3, on-line. Hopefully, you will get quite a few replies.
But, I have to say, you are not what you eat, you are what you absorb. And hypos often have low stomach acid, and difficulty digesting and absorbing nutrients. So, even if you think your diet is adequate, best to get your nutrients tested to make sure. Your body cannot use the hormone you are giving it if your levels are not optimal.
I have and posted them on here and all good, weirdly I had no defiency even when I was diagnosed? And since I changed my diet my iron has been over range? I have no inflammation either?
I am seeing my Endocrinologist next week . I am going to ask for T3 as advised by you some weeks ago . Is it unlikely he will prescribe it due to shortages. Is it just not being produced in the U.K. anymore? Is that why so many members buy from abroad ?
There's no shortage in England, it's just that it's so prohibitively expensive, due to the fact that there is only one manufacturer who charges what he likes! That's why doctors won't prescribe it. And, because doctors won't prescribe it, people seek to buy it from abroad.
There is a shortage in Greece, at the moment, and there was a shortage in Mexico. Now, you can get it from Mexico again, and you can also get it from Turkey. But, it all gets very complicated at times.
This is most likely my next step if 150 levo doesn't do it. My levels were similar to yours on 125 and just not enough to make me feel well.
I am nearly 2 weeks and feel pretty good so if thst continues and I can persuade GP that suppressed TSH is Ok, that's great. If not will have to top up with T3.
Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org if you would like a copy of the Pulse article to show your GP.
It was those docs that actually helped me persuade GP to let me go up to 150 because TSH was 0.18 (0.25 ) and I promised to reduce if I had over medicated symptoms. Am thinking of getting test at 3 wks as a reference and again at 7. We shall see how it goes but I continue to be grateful for everyone's help.
I thought it would give me an idea of how my Ft3 and Ft4 were especially if I feel well now, but that declines at 7 wks. Would that be helpful do you think?
I'm struggling to source T3 don't know where to start? Would it be worth me increasing Levo slightly? Or will I just end up with loads of T4 sloshing about?
Thanks humanbean must admit I'm nervous about taking something not prescribed by the doctor but I've I've learned anything on here it's you've got to take control of your own health
Hi Claire, I have been self medicating with Thyrogold for the past 18 months. Having been on Levo for 12 years and getting increasingly unwell.
I have posted a number of questions about how I coped with Thyrogold . Got some good advice so it might be worth checking out my posts.
I did struggle with breathlessness and initially pains in my legs. That has passed and I feel very well on it. I do supplement with a small amount of T3 as that appears to be the only thing that stops the breathlessness.
Hi Claire, I have been getting T3 on prescription for several years after insisting (very strongly) that my GP refer me to an Endo. The 4000% increase in cost was not even mentioned.
I take 75mcg Levo; 20mcg T3 a.m. then half a tab. = 10mcg. early p.m.
The GPs who refuse to prescribe it even when advised by Endo seem to have forgotten they are meant to do their best for patients.
I do understand your reservations about GP. If you know he/she is resistant to listening to you is there a possibility to change to one who does all they can to improve outcomes?
This might sound a bit 'out there' however I see it working for so many people including myself.
When facing a challenging situation......usually a better result will happen if you envisage what you do want. As much as you can, focus your energy on positives. It helps with body language & tone of voice.
To be fair to her lifelong so far she has been supportive when I have approached her when I asked for a dose increase she said she's learned to treat the person not the numbers although getting an appointment with her is a trial in itself! I'm attempting to get a phone consultation with her on Friday morning and will discuss a T3 option with her. I am fiercely independent and since my diagnosis in February have taken every step I can to improve my Hashimotos and do feel loads better but miss being able to do the physical activities I enjoy , camping skiing jogging but if I do them I crash and it makes it difficult to work. You're right though I shouldn't assume my request for T3 will be met with a resounding no I may get lucky? Fingers crossed.
Your GP sounds good. I'll be sending you & her good vibes for what you want & need from your phone consult.
I completely understand how you feel about not being able to be anywhere near as active as you used to be.
Being fiercely independant is the best way.
I'm recovering from Lyme disease which started the Hypothyroidism since 1995.
Overnight my joyful life as I knew it ended. NHS dgn of ME for 10 years, then Private blood microscopy proved Lyme/Borreliosis + several co-infections (a very complex disease) It was treated with various mixes and pulsing of abx for 8 years, then strong herbs 2 years. Haven't been able to work at all (I loved my work as a studio potter), socialising is virtually impossible. Thank goodness for phone & internet!
Very gradually the 40+ symptoms are going, but low energy is still the most limiting.
I always knew that somehow I'd find ways to recover at least to some extent which has kept me going. I'm the only Lyme patient I know of on low income, unable to afford all the tests and treatments, who isn't fast deteriorating. I have as good a diet as possible.
I accept all and any spiritual healing offered, and do daily spiritual practice to increase my self healing. It helps me to stay cheerful.
Good for you lifelong I adopt very similar strategies I was only diagnosed in February and have made vast improvements since thanks to this site avid reading and good self care a loss of good health is a bereavement in itself x
Hi Claire, like you I finally got back to feeling quite well after being diagnosed 15 months ago so joined the global challenge at the end of May. I have been walking, cycling snd gyming to the equivalent of approx 12,000 steps a day but like you have started crashing. Below are my before and after blood results and no the FT4 result in June is not a typo!! I did have severe vit D and b12 deficiencies in March which have been addressed with loading doses.
TSH T4 T3
Date TSH (0.3-4.2) FT4 (12-22) FT3 (3.1-6.8)
22/03/17 0.051 - 21.8 - 4.8
28/06/17 0.35 - 14.1 - 4.4
My FT3 has not dropped by much but my FT4 is tanked. It looks to me like I am simply using up the T4 faster than I am putting it in and it has finally teached a point where I dont have enough to maintain my 'well' FT3 level even if my conversion has improved. You may be having the same problem, especially if you are not converting well in the first place.
I also have a good GP who agreed to raise my levo despite bottom of range TSH but asked me to scale back the exercise a little bit for now ☹️ I am also considering I may need to add some T3 as I need to be able to do a decent amount of exercise if I am ever going to lose the 7 stone that have piled on over the last few years
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I'm on 125 levo take it on empty stomach at least 1 hour before food/drink
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