I have had hypothyroidism for 2 years, initially I felt better after starting Levothyroxin, but for the past year I feel worse than ever.
I'm going to see an endocrinologist in a few weeks who I'm hoping will prescribe T3.. My GP says there is a good chance of getting it because my T4 level is high yet I'm still showing severe hypothyroid symptoms. I tried cutting my Levothyroxin down to 125 instead of 150 and felt horrendous to the point of falling asleep at work!!! So I'm back on 150 until I see endo.
My tsh is 0.5 but can't remember the others ( brain fog)
Is there anyone else who has been prescribed T3 in the UK as I understand that it's very expensive and therefore not readily available to all.
Thanx in advance
W x
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Wasimps
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No GP and endo don't believe in them have had to resort to self medicating. Hope you are successful in the NHS it is disgusting we can't get the treatment we need.
I'd endorse that. My endo wont entertain T3 and even wanted to cut my levo, although she said I wasn't on a high dose, because my TSH was 2. With low FT3 and FT4. She'd have kittens if she saw it now I am self medicating, but I haven't felt so well for a year or more so I am not stopping now!
Wasimp, there are members prescribed T3 in addition to Levothyroxine. My endo prescribed it after I improved my health self medicating in between 6 month appointments. Unfortunately, there are areas where the CCGs have banned prescribing of T3. I'm sure it is to do with cost but they don't admit that as a reason.
I think it a bit of a post code lottery, and the views of each individual endo as to whether you are prescribed it or not.
Good luck with your appointment. However if unsuccessful you can email louise.warvill@thyroiduk.org.uk for a list of sympathetic endos/doctors that members have had positive experiences with.
Flower
Yes I got it prescribed by my gp as I was allergic to t4 . Was on armour but they stopped that after a month for whatever reason ?
You need to have your bloods tested for T3. You can go to private labs for this such as Blue Horizon. I thought I needed to have T3 but my bloods recently came back normal! So back to the drawing board.
You can have perfect blood serum results but still be hypothyroid. I was for four years and had the hoarse voice and cough that you previously posted about.
This is because these results are not indicative of what hormone is being received on an intracellular level. If meds are not utilised properly by the body (and there are various reasons for this) they can have a negative effect, preventing further meds from working (RT3).
You have gut issues which would have a knock on effect. High stomach acid can be disguised as low, together with a lack of bile, malabsorption problems and probably high/low cortisol levels would all impact thyroid function.
Addressing your gut issues will (indirectly) encourage thyroid meds to work but can take some time. My hoarse voice and cough went once I was moderately medicated.
Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
Thanks for your reply, my coughing and Hoarse voice are significantly better, not sure why other than the mild changes I have made to my diet like drinking de-caff tea and coffee, limiting oranges & orange drinks. Unfortunately my other symptoms of hypothyroidism havn't gone (hot flushes, swollen ankles, muscle ache), despite taking upteen minerals and vitamins and taking Cow thyroid tablets (as recommended by Dr Petefield). I've just started taking NDT which cost a fortune from the states.
Improving your diet will allow thyroid meds to work better and the links above advise how vital a good healthy diet is.
Flower
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Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
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Yes my endo prescribed it but unfortunately it still didn't work for me. He then prescribed Armour but this had to be done privately he cannot prescribe it on NHS. I now buy it with his agreement direct from USA.
There was a post on here last year where an administrator posted a listing [spreadsheet] of most/all areas in this country where T3, Armour and Erfa are prescribed... many people have no difficulty getting these prescribed. A copy of that information could well help your doctor to give to you that which other people seem to have little difficulty in obtaining for their health.
Following a 'bad batch' from the US a few years back [my relatives used to ship it over to me], I had Armour prescribed for a long while by my GP via NHS prescriptions [and still do on occasion]. Let your doctor know that there is not a problem with him prescribing Armour for you. Ask your local chemist what their charges are: [check because there are huge variations on either private charge to you or indeed to the NHS; I am careful with both, AS IF it is my money!].
There is so much misinformation going around on everything thyroid!
Yes I had that list. I wrote to CCG and they said they will not prescribe in Worcestershire. I did put response on a post 10 months ago if you want to read it. Thank you. Very frustrating!
My goodness, wedding2000 - that is shocking. Apols... there are guidelines where the DoH clearly states that people with hypothyroidism can have appropriate treatment for their needs. I certainly do not live in an area where use of Armour or T3 is embraced by the teaching hospital [absolutely the reverse, in fact]. Entirely frustrating!!
I think I may have to write to my MP but I am not confident anything will happen unfortunately. I can move to neighboring Gloucestershire and get it there which is ridiculous.
Ridiculous alright. You know, I recall in mid-late 70's the NHS being told to get rid of its growing tiers of management. In the 90's management then became even bigger to include "Corporate Governance"... someone needs to get in there to massively streamline administration and then shake the s*it out of those left!
No consultant would prescribe anything for me due to their ludicrous ranges... anyone could even see that I was ill, let alone with a lot of signs/symptoms and photos.
Dr S and Dr P diagnosed me, Dr P prescribed Levo = couldn't tolerate because I simply didn't need, then Armour = initially I got privately but then GP prescribed. [I now take T3, sometimes Armour... when things go badly wrong in Winter with my hideously low temps... I use it because I get punch-drunk with the cold and have no clue what else I can do. I have never asked any medic for T3... NHS stuff, I have heard, isn't much use.]
Hypothyroidism is in the worst state imaginable... if those amazingly clever and brave forefathers could lift their heads to see what 'endocrinology' has done to patients, then I suspect they would throttle them by their damned scraggy thyroids!
I saw an endo in Oct last year and he said that T3 isn't the recommended treatment for hypothyroidism and he would not be prescribing it. I had been buying it and he said that how much it was costing wasn't that bad, so I could carry on doing that if I wanted to or stop taking it and he would get me on a dose of T4 that suited me. As it turned out, T3 wasn't suiting me anyway, so I just stopped taking it. Am now on 150mcg T4 since Aug last year and have felt ok for the majority of the time, but have my moments where I am shattered and have also gained weight. Due another blood test this week and will go back to self treating with T4 doses, once I have the results, if I need to, stuff numbers on a piece of paper!
I was prescribed T3 on NHS and now, after the T3 only made a difference for a short while, I am on Armour on NHS. I got through a bit fight, threatening MP, law etc etc. At the time there was advice about getting what you need on NHS via Thyroid UK (use their letters). If you have Hashimotos Disease as I and 80% of population has, you will not be able to convert T4 in Levothyroxine to T3 which is the usable source of energy for your body. So T4 backs up in your system and makes your symptoms worse. I would advice having Thyroid Antibodies tested to see if you have Hashi's. Then you definitely need T3, though I would currently recommend the NDT (Armour) Route if poss.
When I was on Levo and had a sensible doctor I was allowed to bump up my T4 dose until I felt normal. Neither of us paid any attention to TSH. The way it worked out was that I reached 130mcg Levo and it turned out that at that level my liver (or wherever) was manufacturing enough T3 for me to be functional/normal. I think that many of us who are saying that we do not convert T4 to T3 actually can if given a high enough dose of T4 - but, of course, we never will be because that makes our THS lower than the medical profession wants to see.
LAHs, Some of us are poor converters. Thyroidectomy means I lack thyroidal conversion and periperal conversion isn't sufficient. FT3 was top of range when FT4 was >32 but dropped below range when FT4 was in the upper range.
You probably know this but if 125 is too low and 150 is too high you can hit the center, ~137 by taking 150 three days a week and 125 four days a week. See how you feel on this new dose (137) and then use the 137 as your "too high" or "too low" dose. If on 137 you still feel sleepy repeat this process using 137 as the low dose and 150 as the high dose. You will have to do a bit of arithmetic - just do it by trial and error on paper 'til you get very close to the dose you want to try.
Lets say you were still sleepy at 137. You could take 150, five days a week and 125 two days a week, that would be a dose of 143, the new mid point. And so on and so forth.
All doses mentioned here are in mcg, the usual dose for Levo.
I have already tried this but was taking 137.5 a day by taking 1-100 1-25 and 1/2 -25 Mcg, I still felt awful it is so debilitating.
Tiredness is awful and I'm also always freezing cold, even in the summer!! I cannot lose weight and suffer from bloating and water retention. Joint pain and headaches are a daily occurrence. I have a very stressful job which requires a good memory, if I don't write it down it's forgotten. My hair which used to be full and thick is now dull and much finer. I only hope that the endo I see is open to trying me on T3. I feel like I'm not living my life I'm just existing in it 😞
Thanks for all the supportive responses, nice to know I'm not alone in this fight.
W x
Good luck my gp or endo would not prescribe said my tsh levels fine were the same as yours would not do other tests have had horrible experience with endo appt still had fatigue brain fog etc etc !! I hope you have a more approachable doctor wish u the best ! I did get it but through my phych doc my gp wiped there hands of me will not support me with it at all !!!
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