I am diagnosed with autoimmune hypothyroidism since around 2010. (Although, at that time the diagnosis was hypothyroidism, no mention of antibodies.) Back then, I didn't even have any symptoms in the first place (that I was aware of,) and was prescribed levothyroxine. I would say that to begin with I was slightly over medicated because I can remember feeling slightly hyper and sweating more and didn't even really understand why I was prescribed this medication.
Since then, there were times when hypothyroid symptoms would be obvious and times when I thought I was fine, but the thing is it is only recently that I have joined up the dots and realised I was having many symptoms that I didn't even realise were most likely caused by hypothyroidism.
In the past I thought maybe I don't even need levothyroxine, and my occasional symptoms had something to do with the levothyroxine shutting down my own thyroid. So, at the start of the year I attempted to reduce my dose (from 125-150 mics a day down to 100 mics a day.) I felt fine for the first 5 weeks but it turned out to be a disaster. I waited a bit hoping that my own thyroid would start to work again but no such luck. I went back to 125-150 mics a day.
My lifestyle used to be unhealthy but I've made big improvements this past year and take loads of supplements. I've come to the conclusion that I need to try T3 along with the levothyroxine. I would provide some of my blood results but the thing is it's from early in the year when I was experimenting with a lower dose of levothyroxine so it isn't really relevant right now.
I did ask my endo about T3 in the past and she made it clear she wouldn't prescribe it.
Some symptoms that I experience,
Excessive hair loss, weak muscles all over, chronic muscle twitching that can't be helped with electrolytes, feeling lethargic and unable to do chores, exhausted after I do exert myself. Aching legs. Blurred vision. Brain fog and unable to concentrate. Acupuncturist told me I have weak pulses and scalloped tongue. Anxiety and depression. that's all I can think of right now!
I don't have faith in my NHS endo to help me, they have actively harmed me in the past!! I can't afford to see a private Dr right now, that's why I want to order T3 online.
That's my story, sorry I wrote so much, I didn't intend for this post to be so long.
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JasmineJasmine
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It's much better to go by blood results for adjusting dose or type of treatment as low FT3 or FT4 can cause very similar symptoms to too much thyroid hormone.
I'd recommend you get some fresh private blood tests that include TSH, FT4 & FT3 so you can properly assess your current levels. How will you know how much T3 to take anyway if you haven't tested and then monitor blood results after you add T3?
The other thing you need to be aware about are vitamin levels. When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
There is also a new company offering walk in (includes free blood draw) & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
There are many small details to hypo treatment that it pays to become aware of and then address in order to be well.
Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
Thank you so much for your reply. Your advice is extremely sensible. The thing is I can't afford a private blood test right now. I do have an endocrinology appointment not too far off so at least I can see my blood results even if I don't trust them to treat me properly. At least at my last appointment I was told that I don't have any vitamin deficiencies, I know they checked for anaemia, but I'm not sure what else they tested, and I realise that normal isn't the same as optimal, so I will be paying close attention to the next blood test. I try to eat gluten free but I fall off the wagon sometimes. I have found advice online about dosing with T3 and how to take it so I feel confident to try adding a low dose and see how I feel. In an ideal world I would have the full support of a doctor or endocrinologist but I'm not going to get that from the NHS and I can't afford to see a private DR any time soon. Thank you for your suggestions and thoughtful reply :o)
Do get a printed copy of any results from the hospital. A doctor will tell you everything is fine even if you are 1 point above deficient and you will be feeling unwell from it.
People with low vitamin levels often don't tolerate T3 well, it is quite different to Levo
Thank you, I appreciate your replies. Whenever I have asked Drs for copies of blood tests in the past they have refused for some reason, only giving me very limited information. I will definitely insist at my next appointment.
Get copies of ALL recent results including vitamin levels
When you reduced dose levothyroxine your vitamin levels will have fallen off a cliff. It can take many months for iron and ferritin levels to recover
As Jaydee1507 said …..within range is not optimal
BEFORE considering adding T3 get all four vitamins to OPTIMAL Levels and fine tune levothyroxine dose
Which brand of levothyroxine do you get and is it always same brand
Get thyroid and vitamin levels tested via GP BEFORE consultation with endocrinologist, otherwise appointment is waste of time
Book early morning test…..8.45am ideally. Only drink water between waking and test and last dose levothyroxine 24 hours before test
Be aware that if /when you start adding T3, if it’s not under care of medics……you can have a battle keeping current dose levothyroxine prescribed if/when TSH drops below range
Thank you. I think I will arrange a blood test with the GP ASAP and demand a print out this time. The 100 mic levothyroxine are by Accord. The 25 and 50 mics are by Teva. I think the brands are often different.
Jasmine if you have NHS app you maybe able to access your blood test results that way. I couldn't but recently my GP Surgery has started uploading them. Worth looking to see. You do have the right to view your blood trust results. You do really need to see them before starting any T3 type hormone treatment to see if you are a poor converter. For some it's about getting vits/, mineral optimal. This can be enough to help conversion/,uptake for some people. Others as you have read do need T3 added in.
Could you get all Mercury Pharma brand or all Accord next prescription. …or even all Teva
Are you on dairy free diet or lactose intolerant?
If yes, Teva may be best option
If you wanted to try all Accord, they don’t make 25mcg
GP would need to change 25mcg prescription to more 50mcg tablets and cut in half to get 25mcg
Many people find Levothyroxine brands are not interchangeable.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots,
Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
Lactose free brands - currently Teva or Vencamil only
Teva makes 25mcg, 50mcg, 75mcg and 100mcg
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
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)
Aristo (currently 100mcg only) is lactose free and mannitol free.
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.
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
if you are going to take T3 you would have to find the cash to ensure regular supply and very importantly to get private blood tests 6-8 weeks after each dose change
Thank you so much for your reply. I take it in the mornings. I am careful to take it properly. My blood sugar is all over the place and I don't feel able to avoid food and take it before bed right now. I have had some B-12 injections. I take B-complex, as well as thiamine tablets. I was taking a B-12 spray, which just ran out. I take magnesium glycinate, as much as possible. Vitamin E. Iron. I was taking zinc but it ran out. Copper. Selenium. Cod liver oil and omega 3 fish oil. Ascorbic acid 1000mg a day. creatine. N-Acetyl Cysteine. I was taking potassium but it ran out. I have some guggul which arrives today. I've never tried it before. I've spent hundreds on supplements in recent months!! I don't know if I will be able to keep up with all of them. If it comes to it then I will just order the bare essentials. I have ordered some T3 to try, I will start with 6 micrograms. If the T3 makes me feel better, then I will beg my endo to prescribe it. From everything I've heard, I'm not optimistic, and I've mentioned it to her before, she gave the impression she wouldn't prescribe it anyway. If it works, and I have to keep buying it, then maybe I can save money since I won't need to keep buying so many supplements out of desperation.
Thank you. I will endeavour to check my blood levels ASAP. I did an at home test for ferritin a couple of months back and it indicated that I was low. This was a cheap finger prick test from Boots. I should have gone to the GP for more tests but I avoided it for a number of reasons. I rarely eat bananas because I try to eat a keto diet. I've read that the ideal daily amount of potassium is close to 5000mg which is very difficult to get from food. I also take glycine to help me sleep and just bought some collagen peptides since all of my muscles are wasting away. But with inflation I can't continue like this and I have debts to pay.
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
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
Or get GP to test
Test vitamin levels at least annually
Monitor My Health now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
Thank you so much for your advice. I really appreciate it. I didn't even know that iron and ferritin were different things, or that you could be high in one and low in the other. I have been anaemic in the past but I was told earlier this year by endo that I wasn't anaemic. He said the red blood count was 133. However later in the year when I did the finger prick test and combined with how I was feeling I just assumed that I had become anaemic again.
Thank you. I was having some private B12 injections but my money situation is bad right now so I won't be doing that again for the foreseeable future. I take a B complex every day. My B-12 spray has just run out. I will get my vitamin levels checked ASAP.
My tongue is scalloped one side only and dips at nail growth area only on thumbs , quite weird I think, I’m undiagnosed but do have another long term AI condition of rheumatic order and suspect hashis although locum GP mentioned cancer but I think that’s nonsense . Is it possible partial tongue scallop is proof?
Maybe have a look at symptoms of B12 deficiency? Take a look on the PA site here on Health Unlocked. If you put B12 deficiency symptoms into the search bar it should take you there :).
Let me know if anything helps you cause I have the exact problems as you. I just take one day at a time. Praying to God to help me thru this. I will pray for you right now. Father please help this lady , heal her please father. She is in pain and agony, she needs a healing only you can give, help her give her peace of mind. Thank you father in Jesus name amen. Take care of you and God bless
Oh thank you so much! I do believe that God and the Universe have helped me to realise that it is my thyroid which is causing me all these problems because in the past I had too many other problems going on and I just blamed my issues on other things. When I mentioned anything to my endocrinology team they blamed it on other things and I trusted them when they assured me my bloods looked OK. You have reminded me to pray more. It doesn't come naturally to me as I was raised atheist! God bless you and I hope you also find healing. It's true, God can heal everything, I really believe it. <3
hey I was just reading some old post and was wondering if you ever got your thyroid under control and if so what kind of meds and vitamins do you take. I’ve been on synthroid and Levothyroxine sorry probably spelled wrong but don’t feel like looking up, for over 30 years and have felt awful my whole life and now feel the worst I’ve ever felt. My fatigue and dizziness and pain are unbearable and I stay in bed 90 percent of time with cfs and other stuff. Anyway I hope you found help, still praying for my break through. Take care and God bless
This post is 7 months old and the original poster hasn't returned since.
If you would like some assistance then do start your own post with your latest blood results for TSH, FT4 & FT3, also key vitamins ferritin, folate, B12 & D3.
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Remember me asking you if I'd be crazy to start taking 50mcg of levo?
Can someone talk to me about thyroid resistance or similar?
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Please help me understand my blood tests. 
I can't get my thyroxine dose right, can anyone give me advice?
