I'm a 46 yr old man who has been diagnosed with hypothyroidism for over 20 years. I'm currently on 200mcg per day of Levo-Thyroxine which has never really helped me, going back and forth to GP's only to be told rubbish and left to feel like death warmed up!
My Thyroid journey is below, quite long winded but please read it and see if there is any advice you can give me! Also I'm about to start a self medicating trial for 3 months using combination therapy of T3&T4 .. The forums etc say that the dose rate is around 4:1 in favour of the T4 .. So do I take the full 200mcg with 50mcg of T3 or do I split the dosage as such to 100mcg of T4 and 25mcg of T3?? Also if anyone knows of where I can get some T3 in the UK please send me a private message with the details,
Lately my symptoms have intensified as such, been having blood test after blood test and having my dosage 'tweaked' from 200 to 225 and back again. One appointment I went to the GP and they asked me what dose I was on, I replied 225, they replied well you only should be on 200, go take 200 for a week and we will do your bloods. Once I had, had my bloods done I rang for the results, the RECEPTIONIST told me my bloods were ok and said nothing else so I asked for a phone appointment with the GP. They called me at the allocated time and said 'Hello your bloods seem a little low, what I suggest is that you go on 225 for 6 months and then come back! I challenged their diagnosis of the situation and the fed me a complete load of rubbish. I then made an appointment and told them face to face that their handling of the situation was laughable. I demanded to see an Endocrinologist as I felt that the GP's intervention made my condition and symptoms worse what with playing around with juggling around doses of anti-depressants that I probably don't need.
Once at my Endocrinologist appointment the Dr gave me a some what 'slack' physical examination (I worked in the Middle East for a long time, have had physical examinations for many reasons and his one was a joke!) .. He then stepped away and said 'I can't find anything wrong with you, go back to your GP' He then brought up a TSH/T4 graph and said your bloods are in range .. Took absolutely NO NOTICE of the symptoms I was having what so ever. He told me to come in the next morning and have a blood test. The results showed that I was supposingly in range and 'OK' BUT all they tested for was TSH, Free T3 & Free T4 and Cortisol. The cortisol levels were under range and he said that he would arrange further tests for that .. Some 4.5 months later I get a letter saying 'Sorry it's been a while, but I'm arranging further tests etc' by the time I have this additional test it will be over 6 months after the initial test that revealed the deficiency!! I have recently had a private blood test done called 'Thyroid + 12' that totally contradict the endocrinologists findings, also shows very high levels of anti bodies that suggest Hashimoto's AND a marked Vitamin D deficiency. The VitD and Hashimoto's antibodies were NEVER tested for or even mentioned in ANY consultation I have had before.
I then went to my GP (Not the old one but a rather nice one) and asked them about a trial on a combination of T3&T4, they replied that, that medication is a 'Specialist Initiated Medication' and they would have to ask the Endocrinologist I had seen previously. They got a reply about a MONTH after, this is what it says:-
' Thank you for your letter regarding this gentleman. You enquiries about the use of T3 in this gentleman as an add on to Free T4. We generally do not recommend using Liothyronine given the lack of robust evidence and, in our experience we have found that Luothyronine usually causes more short term and intermediate harm than good and therefore it is not recommended. This gentleman awaits a short synacthen test and I will be in touch with the results'
What a CROCK!!!! Here is a so called 'Specialist' who is willing to diagnose a patient without ALL the data and then comes out with that. I have contacted them with some questions, a request of the 'evidence' they have against T3 for 2nd opinion purposes and supplied the new blood tests, I await their reply.
Anyone else had this kind of laughable treatment?
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Quasarlis
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Quasarlis Unfortunately your experience isn't rare. So many of us here have had similar treatment (or should that be non-treatment) from many doctors and endos who would be better off pursuing a different career.
So, first of all, let's see your Blue Horizon test results and we can go from there. We can see if, and how much, T3 you might need to add. We can give guidance on any vitamin and mineral deficiencies and what supplements to take and how much.
Next, you can't get T3 in the UK (well, you could buy some dodgy stuff from a body building site, but don't go there!). If you're going on holiday to Greece, the Greek islands or Turkey, you can buy it over the counter. Otherwise there are some overseas suppliers that can be recommended by members.
As far as your Hashimoto's is concerned, here are a couple of things to get you started.
1) Adopt a strict gluten free diet. This should help reduce the antibodies. Gluten contains gliadin which is a protein thought to trigger antibody attacks.
Your friends could send you some, it is quite cheap to buy over the counter in pharmacies, not much more than €1 I believe. But from what I understand they may only keep a couple of boxes in stock and might have to order it in, or they could go to different pharmacies.
Buying from a member recommended supplier will be a lot more expensive - 150 tablets (5 boxes) would be about €40.
I could do with a friend that lives in Greece. I asked my daughter to bring me some back from Cyprus last year when she went on holiday, unfortunately she let me down
I sent myself some as I didn't know how much I could bring through customs, though they didn't check my case that thoroughly. The strips are quite compact, & each one will click into another strip to make them less bulky. Six strips will fit into a box with the information sheet removed, & one package I just wrapped six strips in the information sheet to keep the size down. Not sure if it's entirely legal as customs allow it for personal use or for a relative, but as it can be bought at much greater cost than the OTC £1 via a company, I assume it's ok. Make sure your friends send by recorded post!
It's mad as my TSH & T4 are above range! Had my bloods done loads of times before by the GP and it's been 'OK' ... The reverse T3 is in range but it's high and it's nearly out of range!!
Quasarlis It would be interesting to see the latest results from your GP to compare. Ask for a print out, you are legally entitled.
Your TSH is really high considering how much Levo you take, and it's puzzling that your FT4 should be over range with such a high TSH. Your FT3 is quite low in range which can point to poor conversion when FT4 is high.
Good conversion takes place when FT4:FT3 ratio is 4:1 or less. Your ratio is 5.59 : 1
However, your reverse T3, whilst in range, is very near the top of the range, so instead of making enough FT3, you could be making rT3 as well. But, of course, a high in range rT3 may be normal for you. There are so many variables.
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B12 is pretty good. The recommended level is very top of range, even 900-1000. If you wanted to nudge it up a bit I'd suggest a low dose sublingual methylcobalamin lozenge such as Cytoplan 500mcg cytoplan.co.uk/vitamin-b12-... or Solgar 1000mcg (but you might not need that one every day, I take that one 4 or 5 days a week to keep mine about 1000).
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Folate is low, it should be at least mid range so 12+. You can supplement with a good B Complex, which is a good supplement for us Hypos anyway. Look for one with 400mcg methylfolate, some suggestions - Thorne Basic B, Metabolics B Complex (I would take 2 of those).
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Ferritin is recommended to be half way through range, which is 215 so you're a bit low. Eating liver once a week will bring that up and keep it there.
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Vit D is deficient. Recommended level is 100-150nmol/L. You should buy some D3 softgels - my choice is bodykind.com/product/2463-b... which is a very good supplement at an excellent price. Take 10,000iu daily for 8-10 weeks then reduce to 5000iu daily. Retest in July. If you only want to test Vit D you can do that with City Assays for £28, a fingerprick blood spot test vitamindtest.org.uk/index.html When you've reached the recommended level you will need a maintenance dose for life. Possibly 5000iu alternate days in the winter, or 2000iu daily, maybe 1000iu daily in the summer. The recommendation is to retest once or twice a year to keep level within the recommended range.
D3 aids absorption of calcium from food and K2-MK7 directs it to bones and teeth where it is needed and away from arteries and soft tissues. D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.
Magnesium comes in different forms, check to see which would be most suitable and as it's calming it's best taken in the evening, four hours away from thyroid meds naturalnews.com/046401_magn...
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Antibodies addressed in previous post.
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Optimising vitamins and minerals should help thyroid hormones work better and I would suggest you work on those as a first step.
You could add a little T3 and it's best to start low and go slow. You could reduce Levo by 25mcg and add in a quarter of a tablet of T3 ie 6.25mcg. Leave it for two weeks then add in another 6.25mcg T3 and reduce Levo by another 25mcg. See how that goes for a few weeks. Retest after 6 weeks and you should see your FT4 has lowered and FT3 increased.
Tweak meds and test as necessary.
Your high TSH still puzzles me so see if you get any other suggestions.
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Please be aware that I am not medically trained and my reply is based on personal experience, research and reading. My suggestions are suggestions only, not advice.
Thank you Seaside!! I will certainly look into all that!! As for the Vit D my GP gave me a course of cholecalciferol 20,000 IU capsules ... And I'll do a test after the course.
The blood results from the so called endocrinologist are below, these were taken in October 2016, so there is a few months gap between them .. My meds have been the same since and up to the BH test ..
CORTISOL - 279 (He mentioned that if it's below 350 he will arrange a Synacthen test .. it has been arranged 6 MONTHS later!!)
TSH- 1.12 .. unit mu/l, Range 0.34-5.6, Status F
FREE T3- 5.7 .. unit pmol/L, Range 4.0-6.6, Staus F
FREE T4- H 21.1 .. unit pmol/L, no range given, Status F
That's it, nothing else
I have sent him my Blue Horizon results and I'm awaiting his reply ..
I have contacted them with some questions, a request of the 'evidence' they have against T3 for 2nd opinion purposes and supplied the new blood tests, I await their reply.
When/if they tell you what their evidence is please copy it into a new post for us all to see. I'd love to have a bash at critiquing it!
Your story sounds just like mine ,you have every right to be annoyed with the treatment you have received,I saw my so called Dr today and I am going to write to the practice and complain I thaught she was just plain rude to me,I blacked out on Friday and ended up in casualty ,where the casualty dr told me it sounded like a seizure,*my opinion from being over medicated for over a year (i got access to my blood tests) my dr said I just fainted no explanation to why or offer of a referral, to neurology. when I asked to be tested every 8 weeks to ensure I stayed in the normal range she said it would be a waste of resources,(even though I haven't had a normal reading for 10yrs ,unchecked my Tsh goes from one extreme to another ,and feels like it too,)she just said well I didn't think you would be pleased with that Mrs Neill. So I am left out in the cold she's supposed to be looking after me.it seemed to me she wanted me out as quickly as possible because they hadn't been doing their jobs properly.
hi there, i am from Australia and I too have been treated the same way. I have never even had a referral to an endo! I have the same problem on T4, its like my body isn't converting? I do find that anti inflammatory foods and supplements sometimes help the body absorb better too, fish oil etc.
the people on this site are lovely and have been so helpful to me and I am so happy to have found this site and get some good advice for my hypothyroidism as my gp doesn't know much. I have asdked for t3 as i know it works for me as my specialist put me on NDT extract and the T3 in that helped heaps.
I too have had to get T3 myself as the stupid gp wont listen and does not care!!
when are you starting t3? hoping it will help you, i have a lot of inflammation in my body and the t3 works a lot better for me when i am taking a lot of anti inflammatory foods and supps.
List of anti inflammatory supps and foods= fish oil, vitamins A,B-6,C,D and E,fibre,flavonoids,Tea,turmeric etc. foods that are good for inflammation are chia seeds,coconut oil,oily fish,ginger,garlic(i have read that garlic can help auto immune diseases too),brocilli,green leafy veg,grapes,flaxseed,papaya,apple peels,blue berries,green tea,sweet potatoes,cinnamon,kale,Asian mushrooms,walnuts,almonds,cashews,avocado,hemp seeds,chilli peppers,kelp,tart cherries,bok choy,celery,pineapple and beetroot etc.
This is just a list of what I have learnt an can remember, most of this list came from researchers the university of south Carolina so its proven they all have anti inflammatory properties. Of course there is many more good foods but this was just a list of some.
Hi Q, the healthcare system is clueless when it comes to hormones. You would do better watching doctors on you tube like David Clark, John Bergman, Eric Berg and Izabella Wentz who give tremendous advice. Important research has been done and even stem cells are being used. This is really an autoimmune condition and needs a holistic view. Gluten can be an instigator and your diet is important in making progress with this disease.
Oh! Totally off topic but you've added your photo That's lovely Why are people never like you imagine? I don't know what I imagined, but your avatar was always a black female silhouette and here you are, all glamorous
Ha Ha, are you as cute as your doggy? Maybe I shouldn't have done it but I ran across this one and thought it wasn't as awful as most of my photos. I don't like it when people on the radio don't look like what I picture and I know I'll disappoint some people.
Yup! I've had almost exactly the same ridiculous treatments and opinions and testing and attitudes. Some of these so called professionaIs seem truly incompetent. I've had exactly the same guff about T3 from the senior endo consultant at my local hospital and others. And yet I can only cope with relatively low dose T4 and my lack of tolerance for Levothyroxine is met with disbelief and yet appx 50 µg T4 and 12 µg T3 in desiccated thyroid keep my blood levels and my symptoms just about ok compared to 100 µg Lerothyroxine which feels like hell and doesn't even give good bloods.
Hi I'm Jackie I'm on 200 levothyroxine daily along with height blood pressure medication,aspirin,Statins,inhalers,folic acid,I recently had a full blood count my tsh was low so my levothyroxine was put up to 225 which I couldn't tolerate and was left shaking being sick heart pounding and was told there was nothing they could do to help me !!!! Disgusting also my cholesterol increased along with my increase in levothyroxine and think I know have a fatty liver I'm sure they won't believe I don't drink and their wonderfully levothyroxine couldn't possibly caused all these problems , I have no confidence in doctors or endocrinologist s regarding thyroid issues they seem to be more interested in diabetic side of thyroid problems, Also get your T3 Or T4 from abroad it only cost a couple of euros it's worth getting a cheap flight ,greece,Spain,Turkey they all sell it,( just a thought for the day what if pharmaceutical charged the same price for levothyroxine than they do for liothyroxine ) what would nhs do then scary isn't it .GOOD LUCK
brain washed doctors and endocrinologist you can just imagine if pharma did decide to make liothyroxine/T3 cheaper than levothyroxine t4 could you imagine how wonderful this medication would become over night and levothyroxine is outdated and has no proof it converts t4 to t3 !!! Makes me laugh you can almost hear your doctor saying it like they have had a microchip replaced in their brains ! xxxxxxx pathetic isn't it 😀😀😀
Jackie, Statins will interfere with your thyroid meds. Statins use your Thyroid Binding Globulins (TBGs) to transport themselves through your blood to your cells. The effect of your thyroid meds will be reduced. (Steroids will do this too - but that is off topic). Try a more diet oriented way to reduce your BP and/or bad cholesterol - garlic, beets, celery, exercise and lose a little weight, that will get one variable out of the mix and give your thyroid meds a better chance to do their thing.
As you have Hashimotos you really need to address the cause - poor gut function & food intolerances. Just don't expect NHS to recognise this aspect or offer any suggestions.
Many of us have similar disasterous tales. Just replacing with Levo often makes us feel worse
Hashimotos is caused by (or causes) digestive tract to change - called leaky gut. The gut literally gets holes in it & allows molecules of food to incorrectly cross into blood stream causing raised antibodies. Gluten is the most common culprit & the one to start with. You may be astonished at the rapid reduction in symptoms, or it may be slow subtle improvement. But it does need to be 100% gluten free to be effective. Gluten hidden in masses of products, but there are increasing amounts of gluten free options. Gluten in Bread, pastry, cakes obviously, also beers & larger, watch out for soy sauce, pickles, etc. Eating out is getting easier. Eating at friends & family can be tricky
Gluten free should slowly lower TPO antibodies over time.
Selenium supplements can also improve conversion of T4 to T3
Also very important how you take Levo. It must be on empty stomach & nothing apart from water for at least an hour after. Many take Levo on waking, but recent research suggests it can be more effective taken just before bed (no food or drink at least 2 hours before). It suits many of us, but some have tried it & don't like it
No other medication at same time
Also when getting Thyroid blood tests its recommended we get blood drawn as early in day as possible (before 9am) and fasting & don't take Levo in 24 hours before test (take it straight after)
You really need vitamin D, folate, B12 & ferritin levels at high end of range for Levo (& T3) to work.
You may find you can reduce dose of Levo as you improve nutrient levels and antibodies lower.
Quasarlis, I fully sympathise with you on this. I am on 200 mcg on thyroxine, (which I call my natural dose, was on it before my problems began before being messed around) and 20 mcg of T3 lithyronine. I was on 250 mcg of thyroxine, but it was too much I knew that and I did feel yuk.
My story is a long long story, but just to say, I was born with only a partial gland, never worked and always been on medication. Everything was fine until I was 32 and for the last 20 plus years, I have nothing but shear hell from GP/Endo's. It came to a head last July when I was told that they wanted to take me off the T3, which I had been on for over 10 years with no side effects. The consultation got that heated that not only did I walk out, I reported the Consultant! Did not get me very far, but I knew that what be the case in the end, just wanted to make her understand her unprofessional behaviour and implications of her actions.
The upshot was they did not want to prescribe the T3 merely because of cost, but they hide behind how dangerous it is and imply the side effects it can cause especially to the heart. However, my results have proved them wrong. The side effects they refer to are for people who have been using thyroid medication in high doses for the body beautiful and slimming agents when they have normal thyroid function. So obviously like any drug that is taken in quantity, it would have the adverse effect. The Consultant, completely dismissed my quality of life. So I walked out!
I personally would not recommend anyone taking more than 20 mcg of lithyronine T3 a day when on a high dose of T4 thyroxine, especially if you are self medicating. If and when they stop my current prescription, which could end at any time, I would buy the 25 mcg but reduce my weekly dose. If that makes sense. I would only be losing a small amount of T3.
I also have antibodies in my blood, but most people on long term medication and a chronic health problem are likely to as well. My TSH is always very low, I think it was 0.54 last time, it was checked. But then I do not make natural thyroid hormones of my own. The "Professionals" fail to see this and hand out medication like sweeties!
I also have vitamin D deficiency and B12 deficiency and pernicious anaemia which sometimes goes hand in hand with thyroid conditions.
I'm supposed to take 200 levothyroxshit this is what I call it !!! But I've cut it down to 100 and I take 20 of t3 which I bought from greece last year if I still feel a bit shit I take a tiny bit more of levo later on b4 I go to bed I feel much better even just after a fortnight I don't worry about blood test anymore when the doctor sees them he hasn't a clue anyway after all he isn't the one who has to live with not being able to breathe properly hurting all over not being able to sleep well it's like having a permanent hangover !! But I will continue with my own concoction because I feel a lot better I'm also going to greece again soon so I will be getting some more and does anyone know if you can get decent vitamin d as I've never thought of asking if they sell it !!
That is a rather good analogy 'Permanent hangover' just how I felt! ... I'm currently trying the T3+T4 thing at the moment .. I have swapped one of my 100mcg T4 for 25mcg of T3 ... Been on that for around 5 days now .. Nit really sure if I feel better or not yet .. But I am noticing that my fatigue is starting to get better, don't feel bloated ...
I know this is a bit extreme but I do wish I punched the GP that was dealing with me before the GP now and dealt with the consequences of that as he was about as useful as a one legged man in a bum kicking contest!!
I think in my opinion the arse hole who invented levothyroxine falsified his/her findings on this drug I also read it was tested on volunteers who didn't even have thyroid issues so on that evidence how can you conclude that levothyroxine is the gold standard treatment for hypothyroidism !!! Also if it's so cheap how can it be any good !! I mean honestly if it's sold to the n.h.s for penny's from pharma the drug company the n.h.s has to use they would be making billions of pounds on it and would hike the prices as there are so many poor souls out there just like us who are desperate for a bit of compassion and humanity for someone to put a stop to this for once and all !! My description of how I feel I told my doctor having levothyroxine is like giving a cripple a wheel chair with flat tyres, so you have got some help with your condition but we can't put air in your tyres you will just have to manage !!! It's exactly what there saying isn't it !!! I really don't know where thyroid victims will go from here every avenue has been has been ventured and blocked there have been promises of more research and you never hear any thing more about it !! I really think when this subject is raised gagging orders are put in place it stinks of CORRUPTION to me don't know what other readers think but that's my opinion anyway!!! It makes me mad they have loads of evidence that one doesn't fit all everyone is different !!! When someone becomes ill with cancer they have the drugs to treat cancer !! We're talking about hormones so obviously were all different so how can there be only one medication ? Pardon my ranting but we may aswel look at it for what it really is utter rubbish !!
I dread to think what they must put on our medical files when we ask for alternative medication and second opinions bet they say we're neurotic,depressed,argumentative, and time wasters,I only wish they could spend some time in our shoes see how they feel and how quick they would be demanding proper medications !! I bet thou any doctors who do have hypothyroidism don't just take levothyroxine !! It's a shame that some doctors would like to help but are not allowed we could do with a site for doctors to anonymously give there opinions on the poor treatment we receive maybe even a few whistle blowers !!!
I've had similar treatment in the United States but it does seem that you folks in the UK have it worse . The doctors here say that T3 has no effect that it's all in our imagination . There was even an effort with the FDA to have it banned as an approved drug . Many folks who take it for Hashimoto's actually wrote to the FDA - I was one of them . I wrote in my letter that if what this drug does for me is all in my imagination then on that basis alone let me keep having it because I must have a very good imagination - The drug has worked for me for over 20 years . I received a letter once from a pharmacy who told me to go to the doctor and have a new drug prescribed for me because this drug was being dicontinued. I have that letter right now I saved it - This bold faced lie is in writing . The letter from the pharmacy was over five years ago . Actually called Forest laboratories here in the United States they are the makers of armor thyroid . Believe it or not I got a real person on the phone who is assured me that the drug was not being discontinued . Armor thyroid has been made in the United States for over 100 years . I cited that in my letter to the FDA .
I do believe that one day the barbarianism of the treatment of auto-immune disorders from the doctors and pharmacies will become a dark stain and a shame on the medical profession - much like bleeding and blistering used to be an accepted medical treatment.
I too got a good feeling from Forest laboratories when I too called them. They sent me a list of places where it could be purchased - BUT you needed a prescription! Fortunately I found a doc in my local HMO - my fourth doc in that system. Even with all that going for me he wants me to reduce my dose to bring my TSH onto scale - some hopes, I just take what makes me feel normal, to hell what he wants, I just say yes, and do what I want/need.
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