Hello - I apologise in advance for this rather long post but I wanted to give a proper introduction to my history, this is my first post and I'm a new member though I have frequented many helpful health unlocked posts in the past from doing google research. I would be most grateful if you could be of any help. I'm not in a good way and have not been for a while...
I was diagnosed with hashimoto's and hypothyroidism in April of 2015 and have been on levothyroxine (t4) since. Initially, one of my most debilitating symptoms was relieved (enlarged, swollen neck) but did not notice any significant changes to my other symptoms (constipation, sensitivity to cold, fatigue). Leading up to my diagnosis, I was competing at international Brazilian jiu jitsu competitions (IBJJF) in Abu Dhabi and Munich, Germany, was very fit and strong, and weighed 63 kilograms. After commencing with levothyroxine I noticed I began to gain weight. 9 months after my diagnosis I was, despite eating and training at the same level (albeit at a more sluggish capacity) I weighed 75 kg's. I had gained 12 kilograms in 9 months - it was utterly devastating. The fatigue caught up to me so badly I dropped out of BJJ. I continued my medication despite feeling worse and worse each year. My mood became terribly dysregulated - so much so that I was prescribed a low dose antipsychotic in conjunction with SSRI's. Neither helped and I titrated off of them entirely. I knew the underlying issue was my thyroid dysfunction and not that of a psychiatric one - but doctors treated me like a madwoman.
I now stand at 89 kilograms, take 125 mcg of levothyroxine and feel extremely exhausted, anxious, depressed, cold and just about get by. I don't recognise myself in the mirror anymore - and when I look at photos of my energetic, happy strong self from 7 years ago I cry. I'm only 25 right now and feel like I'm much, much older.
I was referred to an NHS endocrinologist at Homerton university hospital and attended an appointment on the 20th of August 2021 and the consultant tested my levels and they showed the following: TSH 1.81 mu/L, ft4 14.3 pmol/L and ft3 4.1 (no reference ranges included). She discharged me back to my GP on the basis of 'incredible normal levels' and refused to initiate a trial of t3 despite my symptoms.
Months on from then I ordered a private test to check my TSH, t4, t3, antibodies, ferritin, folate, vitamin b12 and vitamin d. I was already on a religious supplementation regime which improved my levels somewhat but did not do anything for my symptoms. The levels appear good on paper but my symptoms remain the same. I have listed my results from my most recent blood test dated the 25th of February 2022 below along with reference ranges for your advice.
TSH: 1.1 mIU/L (0.27-4.2)
ft3: 4.45 pmol/L (3.1-6.8)
ft4: 18.6 pmol/L (12-22)
Vitamin D: 74 nmol/L (30-200)
Serum vitamin B12: 607 ng/L (191-663)
Serum Folate: 19 ug/L (3.90-26.80)
Serum ferritin: 62 ug/L (30-400)
I seem to be having a real hard time absorbing iron from the iron bisglycinate tablets I've been taking and from the red meat that I eat, not sure why :/
I also tested for celiac (genetic test) and whilst I do not have the disease, I have the trait and I therefore decided to cut all gluten out in March of 2021 - and do not even consume gluten-free products. My diet consists of low to moderate amounts of carbohydrates, moderate to high fats, and moderate to high protein. I feel best when eating this way. I consume dairy in the forms of goat, feta and cheddar cheese and did eliminate dairy from my diet in the past, but noticed no difference so I incorporated it back into my diet. I do not consume soy based products.
I would really like to get a trial of t3, but don't have it in me to fight the NHS for it. I have been saving some money and would like your help to source a private endocrinologist who is t3 friendly and open to attempting a trial with patients like myself who don't benefit from t4 alone....I was also weighing the risks of sourcing t3 online without a prescription but I cannot locate a single reliable source :/ please private message me a reliable source if you get your medication this way. Also if the endocrinologist was to prescribe t3, would I be able to import it from other neighbouring countries (Germany, France etc) post Brexit or not? (I think its cheaper from overseas)
Any advice would be most appreciated. I used to read through this forum endlessly (but was not a member) and just want to thank all of you who give people advise on how to take charge of their own health. You are a great asset to this forum.....
Hanna
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I can empathize with you on your struggles with your health issues. Your thyroid levels would benefit from having a ferratin level at the very least at the midway point which would be 170 on your range of (30-400). Liver is beyond amazing at helping raise it. I saute lamb liver with onion and divide it up into 7 days a week and freeze it. When I complete eating it in 7 days, I take a week off then. The week I'm off I eat red meat. I continue the process of on 7 days and off 7 days for 2 months and thank God my levels become optimal.
Your vit d would benefit from an increase. I was on prescription d3 of 50, 000 for awhile before my levels increased. Things started improving when I added k2 and increased my magnesium levels. How much are you on? Are you taking the cofactors that help absorb it better?
ft4: 18.6 pmol/L (18-22) You're on 125 and your free t4 is at the bottom of the normal range so it makes me think that you could possibly benefit from an increase in t4. I used the calculate dosage by weight and its not set in stone but could be helpful. A dosage of 137 mcg of t4 would be closer to your needs based on your weight. 89× 1.6 = 142.
When you edit the original post in a thread, you will also have the option to add (or remove) a single image. (To replace an image, remove the existing image, then add the new one.) This is the same process as writing a new post:
I agree with you - I will begin to incorporate liver into my diet, even if I'm not a fan of the taste. How significant was the result when you began eating liver? And Is it something you're going to continue for the long haul?
As for the vitamin d, my level was 36.3 nmol/L (70-150) when I tested it a year prior to now, so it has increased to an acceptable degree since, I take a vitamin d supplement from 'Howard and James' on amazon once daily and the strength is 4000 iu plus vitamin k2 100 ug. I definitely noticed a huge improvement in my elbow/wrist pain from the rigorous pulling and pushing when I used to do bjj. Did you get your vitamin d dose on prescription? I was also considering adding magnesium bisglycinate into my regimen, have you taken it before? If not, what kind of magnesium do you take?
You are right in that I should perhaps increase my t4 - I'll schedule an appt with my GP an request an increase. Do you think an increase may help convert the t4 into t3? What do I do if my TSH drops below range? I've read that it can cause osteoperosis...
There is certainly room according to your TSH/fT4 to try a small increase in Levo.
and a small increase of 12.5mcg or 25mcg may not take TSH below range anyway.
Probably worth a try before looking into T3 if you've never tried a higher dose of Levo ....
I'm surprised the Endo you saw didn't suggest an increas in Levo.
For answers to 'what if TSH goes low/osteoporosis risk .... please see my replies to these posts. They contain list of useful links and evidence on the subject of low TSH /Risk
My brain is past it's best tonight , but will try to be more helpful tomorrow
Thank you so much tattybogle - I have read through your posts, and will go through the links tomorrow too. I'm relieved to hear that the risks for osteoporosis are low so long as TSH doesn't drop below 0.04. I will request an increase - given that my body weight is high now too. The endo was utterly useless - and wrote in the consultation letter that my symptoms are symptomatic of something else - then immediately referencing my ADHD diagnosis as the likely culprit (attention deficit disorder) which is just stupid.
How significant was the result when you began eating liver? And Is it something you're going to continue for the long haul?
^ The liver was and is extremely significant in my life because I can no longer tolerate iron pills. Whenever my ferratin levels start dipping, my free t4/t3 start going down and my tsh goes over the range. I start experiencing awful symptoms and I have to get back on my liver regimen of 1 week on and 1 week off to bring my ferratin at an optimal level. I've been on this routine for several years. My only issue is once I start feeling better I stop eating liver for a few months because I forget about it. I'm quickly reminded again once my symptoms start up. At a ferratin range of 12-109 I have to be near 70 for me to not have crazy palpitations, virtigo and increased insomnia. Also vit c aids in the absorption of iron.
Vitamin D: 74 nmol/L (30-200)
^ Glad to hear that your vit d has improved from 36 but I wouldnt say 74nmol/L is acceptable if the upper limit is 200. You still have a ways to go. Personally I would increase to 8,000IU to 10,000. I was taking 10,000 IU prescription for 5 days a week. There is a website that can help you reach your target of optimal and if I recall slowdragon shared it. You can pm or highlight her to get her attention. There is a certain k2 that is recommended on here so try doing a search on the thyroid forum. I didnt look up your vit d3 but there is a brand that has been mentioned on the forum on here if you're interested. I prefer vit d3 in softgel form. Also have your cut d3 supplement with your fattiest meal, ideally lunch to aid in absorption.
As for magnesium I use magnesium glycinate taken twice to total 330. I cant take it in one go because my body is sensitive
Thank you so much for your advice! Where do you source your magnesium glycinate from? And what improvements have you noticed? I'm really scared to up the vitamin d to 8000 due to excess calcium buildup (I'm aware the k2 works to prevent arterial calcification) but still apprehensive....
with vitamin d, when you say a fatty meal, could I take it together with a bit of, say goats cheese rather than a full meal? I read somewhere that taking it with a glass of orange is meant to increase absorption, is this correct?
SlowDragon Hi! Could you kindly share the website which helps people restore their vitamin levels to an optimal level?
No problem hun. We're all here to help each other out. I'm constantly learning on here and so grateful to others.
Through this forum I learnt the importance of looking at the amount of elemental magnesium that is stated on the label. Prior to that, I was using a supplement that had 70% elemental magnesium. I'm currently taking CanPrev 200mg at lunch and smart solutions 130mg. After trial and error, I've found that I cant tolerate more than 200 at lunch. Also I've tried taking another 200 at night but my heart would go in over drive. I realized through the forum that magnesium can lower blood pressure and I already have low blood pressure soo a total of 400 was too much but 330 was the sweet spot for me. Hopefully you will only need one supplement and not two. Someone mentioned using pure encapsulation on here a long time ago and the brand has been mentioned here a few times. Do a search on the forum to see what other brands are recommended.
I recently found out that high doses of vit d can deplete magnesium so make sure you're on top of your magnesium The biggest I've noticed with magnesium is that its very soothing to the system and it helps me relax at night. Hypothyroidism creates havoc in the system and magnesium is an essential mineral in overall health.
with vitamin d, when you say a fatty meal, could I take it together with a bit of, say goats cheese rather than a full meal? I read somewhere that taking it with a glass of orange is meant to increase absorption, is this correct?
^^ You could I guess but my personal preference is after a lunch .I'm not sure about orange juice aiding in vit d but I know it aids iron.
I remember asking Seasidesusie in pm about k2 and she was helpful. So you can tag her as well if you would like. You can always ask your doc to test for calcification. My doc ordered the specific test to check my levels and I was fine. Cant remember the name of it though I can try to look it up if you're interested. Beside supplementing, I went ham on salmon, goat milk&kefir and sardines with bones to improve my levels. My original vit d levels weres 44 and have come a long way thank God
It's the weekend and a lil slow but hopefully others will chime in sooner rather than later.
Oh that's so interesting I didn't know that taking vitamin d could deplete magnesium! Thank you - I used to take ZMA supplement (zinc, magnesium and copper) when I used to train which used to make me feel an incredible sense of calm and it would aid in a quicker muscle recovery - I wish I remembered the name of that specific supplement, then I tried magnesium malate which was so and so. Thank you for sharing the supplements that you take - I'll look into them!
A very good D3 : Doctor's Best 5000IU's from iHerb I also take extra in oil form by Thorne plus K2 from MK7 ( about 600mcg per day or more) I suggest for anxiety: Mg Glycinate ( Swanson do a 133mg per capsule) and at night I take it in powder form: KAL's or Doctor's best or Natural Factors Mg glycinate ; Taurate is also another form that's good for the heart and Threonate ; Mg Glycinate is great for fast heart beats...I take Mg Malate ( energising and good for headaches) after lunch in some lemon juice with organic Maple syrup ( 200mg in powder form) Before bedtime : around 400mg Mg glycinate again in powder form with a little lemon juice ( as many powders are already flavoured) . Good Luck
Hanna josef, welcome to our forum and I'm sorry you have hypothyroidism.
Quite number of our members have gone to a private Endocrinologist but still didn't get a prescription for T3.
Thyroiduk.org.uk is the website under which this forum is under. They work in the background speaking to the medical personnel etc.
You can email and ask for a list of Endocrinologists. If you decide upon a name, you can put it on a new post and ask if any member has consulted the Endo and was it worth paying money to do so and to get a prescription prescribed .
Re sourcing T3 from Europe I believe that some companies, due to Brexit it is no longer possible to import into the UK.
Unexplained weight gain is common for those who have hypothyroidism as our metabolism is too low on some members if not on an optimum dose of thyroid hormones.
Your FT3 could be a bit higher and FT4 looks o.k.
If you can copy/paste a section of your introduction into your 'page - click on your name - then you don't need to repeat it often as members can read your page and have some background of your journey before they respond..
Hello Shaws, thank you for your message! Oh really, do you happen to know why the patients were refused a prescription for t3? Are you hypothyroid too? What do you take for your condition if you don't mind answering?Could you please provide me with the email so that I can request a list of endocrinologists?
Re pasting my intro into my 'page' I'm on safari (desktop) and I can see 'my feed' 'my hub' 'chat' 'alerts' on the top left corner, and 'more' on the top right, could you please direct me to the correct tab so that I can do this?
I am on Safari too. Look up at the right top and you will see your chosen icon and beside it the word more.Click on your icon and it gives a drop down list.
The price of T3 - which can be sourced abroad at a much cheaper price than in the UK - is high. I think that's the reason Endocrinologists didn't/wont prescribe in UK.
I could improve on T4 at all - in fact I was far worse than before I diagnosed myself - an hour after GP told me I had no problems at all and blood tests fine. The fact is that he had no clue that a TSH of 100 indicated hypothyroidism.
Thousands of hypothyroid people seem to do fine on levothyroxine, although a number complain of increasing weight gain.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Hi slowdragon! They used to change, though for a while now I've been getting 100 mcg of Teva and 25 mcg of North Star. Previously I was on accord. Yes this test was done at 8AM and I had not taken my last dose prior to the test, and I had been fasting.
I thought ferritin and iron were the same thing! I'll look into the difference tonight. I also just returned home from the butchers - I placed a big order for lamb liver! I suppose any liver will do right?
Teva brand upsets many people, but if you are lactose intolerant, can be best option
As with all things thyroid…we are all individual
Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Teva, or Aristo (100mcg only) are the only lactose free tablets
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
Your August 21 levels are not " incredibly normal"
Your symptoms suggest undermedication
Your doctor was diagnosing by TSH alone...science proves this is wrong.
It shows only a fraction of the picture!
Your Feb 22 levels...
ft3: 4.45 pmol/L (3.1-6.8)
FT3 is only 36.49% through the reference range
ft4: 18.6 pmol/L (12-22)
FT4 is 66% ditto
Both Frees ( FTs) should be approaching 75% with the caveat that we are all different...so that varies slightly!
T4 is the storage thyroid hormone and to be effective has to be converted to T3.
Your FT4 is fairly good but could be better...and at 66% you still have room to increase your levothyroxine/ T4 dose.
That extra T4 would hopefully convert to give you a higher FT3...enough to ease your symptoms.
I'd suggest you may need 150mcg or even 175mcg ( raised slowly in 25mcg increments)
Test again after 6 weeks on 25mcg extra and see what difference that makes.
If required you could add another 25mcg and test again in another 6 weeks.
Personally I wouldn't add T3 before I'd ensured
a) essential nutrients are optimal ( vit D, vit B12, folate and ferritin)
b) T4 dose was producing as much T3 as possible, with FT3 remaining in ref range to avoid overmedication.
If after that symptoms persist then the time to add T3 has been reached!
If you can avoid adding T3 it will make life easier.... re obtaining it for example!
I say that as someone who needs high dose T3-only to function....so been there!
FT3 as you know is low and this accounts for your exhaustion/ symptoms
T3 is the active thyroid hormone and for good health a constant and adequate supply must reach the nuclei of the cells from the serum, via T3 receptors.
For the majority of people that T3 comes from converted T4
If T3 is low health suffers!
Sadly there is no quick fix so patience and determination are key!
Hello DippyDame, thank you for your informative comment. I'm going to request an increase in my thyroid meds, I currently take 125 mcg, so will request an increase to 150 mcg. If my GP refuses, what next step should I take? I've placed a big order of liver which I will now incorporate into my diet weekly, as per Imaaan recommendation. Hopefully that will improve my ferritin levels. Do you think my results for the remaining vitamins are okay?
SlowDragon took the time to gather the available info on liver amongst other things, pls go through them. It mentions the amount per week you should not exceed because of toxicity. Click on the link she provided that speaks of chicken livers if iron is good, but ferritin low. The info applies to liver in general from chicken, lamb, cow etc.
That particular post shares a great tidbit from pennyannie if you struggle with consuming liver in general. I grew up eating lamb liver and enjoyed it but cow liver I struggle with so I tried her suggestion of grinding/blending it up. Hopefully with heavy spices especially cumin, onion, garlic and cilantro cooked in your fave oil will be appetizing for you. If not try it the way Penny does it.
Welcome to the forum. It is such an amazing group to find knowledge, advice and expertise.
My endo was Dr Toft. He was always okay with my TSH being suppressed because I was only on levo. He said it did not cause osteoporosis. There is a wonderful thing you could listen to called ToftTalks. If you google that, you will find it.
I have recently started to take T3 because my T4 was out of range and my T3 was only 29% through the range. I source it myself. If you get to the point where you need it, I can tell you where I got it.
I’m also taking Thorne Basic B Complex, a vitamin D spray and a B12.
One of these days, I will write my history because I think it’s a had idea so people can help more effectively.
Hello AppleOrchard, I'm going to follow your journey and I will keep you updated about mine - I'll request an increase in t4 and review 6 weeks thereafter. Suppose my tsh drops really low, and my t4 is high but t3 is still low, (indicative of poor conversion) what do I do in that event? would it even make sense to bump it up more, or would that just create rt3?
I would say it's worth trying further Levo increases yes, but bearing the following in mind:~ there comes a point where more T4 does not = more T3. (ubiquitination ,the glass ceiling of T4 monotherapy thyroidpatients.ca/2018/12/... + other excellent articles about 'everything' thyroidpatients.ca/home/sit... )
~ until recently i would have said there is no harm in keeping slightly over range t4 levels for years, if that is what makes you feel well. But recent research is discovering that our T4 Level (both our own, and that from replacement therapy) has a connection to some types of cancer cell proliferation ( Jimh11 has put the recent research all together in this post healthunlocked.com/thyroidu... ... it is very new area of knowledge so there are no answers,, but is is something to bear in mind )
~ when increasing Levo with a low TSH and high ish fT4 . i think it always makes sense to increase by VERY small increments, and allow at least 3/4 months to judge the effect. Don't go up by more that 12.5mcg at a time, (half a 25mcg tablet) or use alternate day dosing to get even smaller adjustments eg :
100/125 =112.5mcg
125 x 5days , 150 x 2 days = 132mcg (weekly total divided by 7)
125 /150 = 137.5 mcg
.. i found even very small increases like these can have noticeable effects on symptoms and blood results... but to much can make you feel really naff, but not in a way that is immediately obvious as symptoms of 'overmedication'.... it's very easy to miss the sweet spot and overshoot .
But if you can feel well on Levo alone it's a lot less hassle than getting hold of T3 or NDT , so certainly worth giving it a try first .
Wow thank you for sharing that tattybogle - I was considering doing exactly that! Ask for a small increase - does a 12.5 mcg tablet exist? I’ve another question too - suppose I lose a few kg’s (1-5) do I have to drop my levo back down again? And after how long should I retest - 6/8 weeks? Suppose I feel no improvements, do I bump it up more or do I just consult with an endo and request NDT/supplementary t3? Thank you so much for your time and effort!
It is much more expensive than 25, 50 and 100 microgram tablets. About ten times the price.
Some people find they cannot tolerate Teva levothyroxine. (Others find it the best for them.)
helvella - Thyroid Hormone Medicines
I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.
I just got off the phone to my GP - different doctor than the doctor I regularly speak with and she put up so much resistance when I asked for a small increase. At the first 2 attempts she refused altogether and singing the ‘your levels are normal’ song - when I explained that I’m not even on the recommended dose for my body weight, and that failure to treat me at an optimal dose = clinical negligence for which I would complain to the ccg, she immediately agreed to put it up by 25 mcg only after a repeated blood test - I just had my last one on the 24th or 25 to of February! How utterly ridiculous. I asked for 12.5 she said there is no such dose (?) as well. Would you suggest I get a pill cutter and start off with half of 25 mcg then increase up to the full tablet?
In Canada and the US we have the brand Synthroid and their pills come with a distinct scoreline which makes it ease to cut the 25 in a pill cutter. That's what I do with my 25mcg. If you're in a country that doesn't have pills that come with a marked line you still can use a pill cutter to split it. Personally I would just do an increase of 12.5 and retest in 6 weeks. In the meantime work on optimizing your vit d, ferrantin, folate and b12.
Hi Imaaan! Yes my 25 mcg dose also has a line across it - can I use scissors to cut it or would a pill cutter be more reliable? I'm definitely going to go up slowly - will document and report my symptoms in the coming weeks and order a re-test 8 weeks thereafter.
I suppose you could use scissors but my preference is a pill cutter. I think I purchased mine for $6 at the pharmacy over a decade ago and love it. I started using it on my very tiny erfa 30 pill a month ago and its been beneficial
B'ezrat HaShem! Thank you so much for your help - I’ll place an order on Amazon for one. Will keep you updated about my progress in the coming weeks until then take care x
Weight-based dosing is full of questions like that.
There are many formulas. Some simply require weight. At least one uses the person's ideal body weight as calculated from height, etc. Thus one changes with extra weight, the other doesn't.
That is one reason I am so sceptical about dosing by weight.
helvella - Estimation of Levothyroxine Requirement in Adults
A discussion about the use of formulas to estimate levothyroxine dosing.
A spreadsheet with several active formulas which work out possible levothyroxine requirements including NICE NG145 guidelines. These formulas are referred to in the document above.
This is an Excel spreadsheet but is likely to work in other spreadsheet software.
1) yes 12.5mcg tablets exist in UK , but it is ridiculously expensive , and only comes in one brand Teva ( the one that lots of people don't get on with).. so it's much better to get 25mcg's and use them to adjust dose... i cut a 25mcg in half everyday to get 112.5mcg .. (or i could take 100 one day and 125 the next if i wanted)
2) 'usual' weight changes are unlikely to make any difference to dose... going from 16 stone to 6 stone might...
3) take one precise and carefully observed step at a time retest no sooner than 6-8 weeks , blood are 'reliable' after 6 weeks ,, but how you 'feel' can lag behind bloods... so 8 is probably better .
I find the first 5 weeks after a dose change are always a bit up and down symptom wise ... Hormones effects in cells are slow things to rebalance, and the body craves stability... i've (finally !) learned patience .. so nowadays i don't start to assess 'how i feel' until week 5/6 and then give it at least another month to see how it settles.
Don't push the river , it flows by itself ......tedious , i know , but 'tortoise and hare' and all that ... easy for me to say now i'm 55... i would be hitting every option in sight with a big hammer at your age ... but i've learned the hard way .. if you hit something with a bigger hammer out of impatience ,it just bounces back and hits you in the face .
Don't give up ... you will find yourself again, and the new one will be good at stuff too
I really needed this advice, lol! I'm very impatient too, and tend to put things off before they take effect. I will give it a full 8 weeks before re-testing and will increase slowly whilst journaling my symptoms - out of curiosity, do you cut you 25 mcg in half with a pair of scissors/knife or do you use a pill cutter?
well..... i used to get out to bed and walk to the freezy cold kitchen in the early morning , and find my BEST penknife(Opinel )which is kept properly sharpened ..... and then clean up the bits of spring onion that some young people have left on my best chopping board.... and then cut my tablet in half ... and put the other half in a teeny screw top jar . and occasionally think 'one day, maybe i'll buy one of those pill cutter things, but i bet they don't really work as well as my best knife' .......
then one day i read an old post on here where this bloke said he just bites his tablets in half with his front teeth.... and i like a simple life , and i don't like cold kitchens......it works just fine. lol
Doesn't matter if it's not always an exact half with Levo... as long as you have the other half the next day it all evens out.
Can I private message you too? Like MiniMum? I’m significantly older than you but my journey has sounded the same. I too got to 75Kg and couldn’t recognise myself! The heaviest I had been before hypothyroidism was 65kg and that was 9m pregnant!
Hello Hypohappy, yes please do! I would love to hear from you. I got so desperate last year that I dropped my food intake to 1000 calories a day, and yes I lost some weight but I was not functional at all. I went back up to 1500 calories and started putting weight on again. 1500 calories! That's not even the average recommended intake for most women. There's definitely a problem and it's my thyroid what treatment are you on currently and how do you feel? Let's chat in pm.
You do sound like you e been horribly let down by the docs. I’d ask for a trial of an extra 25 mcg Levo to see if that alleviates your symptoms. (Docs think they’re scientists so they love trials.) You could try 12.5 a day extra for six weeks if you want to go slowly. Say you’ll happily test every six weeks to ensure nothing gets out of range. Only after trying with Levo to raise your T3 would I go for lio - it’s a faff but clearly it works for some. I do a combination.
Hi JAmanda, yes the doctors haven't shown a blip of interest nor concern for my symptoms. I'm going to schedule an appt with my GP on Monday and request an increase - let's see what he says! With your combination, do you source it via en endo or independently?
Personally I wish I’d never ever dropped from 150mcg to 125 mcg T4. I felt fine on the former and on 125 like you, I have had constipation, falling hair, feeling cold etc. I’ve actually had a TSH <1 for 20 years no problem. Then a particular doctor decided I was definitely overtreated despite my symptoms and I eventually said I’d try dropping from 125 to 100 with worsening consequences. I eventually saw an endo last year who said I could try T3 high was great apart from the palpitations so I’ve had to halve the T3 dose. (I’m 71 so have been through all the neurotic, depressed always worrying about weight ‘typical’ woman diagnoses. My thoughts is that before trying T3, you first try increasing your dose to 150mcg (without informing the doc) see how you feel and have another blood test (not just TSH ) in 6-8 weeks .
I’ll be really interested to see how you get on if you do.
I’ve found I’m a poor converter of T4 to T3 by the way. Good luck!
You have many replies to consider but I will pm you re private source of T3 available in the UK. I use this site to get mine. Good, reliable and trustworthy site.
I am sorry you have gained weight and it seems to be quite common amongst those who take levothyroxine (not everyone of course) and they seem to gain weight due to hypothyroidism but it is probably due to not being on an optimum dose prescribed by the doctor/endo.
This is a link from a USA helpline re a dysfunctional thyroid gland.
Thank you so much for your considerate message shaws - I do think I was on too low a dose for too long (100 mcg) which was only increased to 125 mcg in September of 2019, still I feel even at 125 mcg I am not adequately medicated. Hopefully 150 mcg does the trick, though I remain sceptical!
When we get a dose of thyroid hormones that suit our body we can find relief of symptoms and feel our health is back to normal.
It can take some time as few GPs will prescribe 'options' to levothyroxine (T4). Some people (if they can get it prescribed) need a T4/T3 combination and some need T3 only. Due to T3's cost in the UK many doctors will not prescribe it.
Our very first thyroid hormone replacement from 1892 was NDT (natural dessicated thyroid hormones) and it contains all of the hormones a healthy thyroid gland would do. Unfortunately, those that we would think were more knowledgeable, find out they're not. The majority seem to believe that levothyroxine alone is fine. Many who have hypo find that a combination of T4/T3 helps immensley. Unfortunately GPs wont prescribe and an Endocrinologist would have to initially.
I couldn't improve on levothyroxine (T4) only as it gave me immense reactions that caused severe palpitations during the night but found that liothyronine (T3) did the trick. I eventually took T3 only and it resolved all my symptoms. I feel well an am symptom-free.
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I'll look into the difference tonight. I also just returned home from the butchers - I placed a big order for lamb liver! I suppose any liver will do right?
what treatment are you on currently and how do you feel? Let's chat in pm.
Results advice and a few more questions, warning long post!
3 month Bloodtest 
NHS Endocrinology appointment with results of NHS T3 tests. Are latest bloods in my favour or will they work against me?
Interpretation of results needed please
Undermedicated
