I have Hashimotos. My recent blood work came back showing my meds needed upping. I've now been on 200mcg since April (consultant upped the dose). How much more until the medication isn't enough? What are the next steps? I'm asking because I'm due to have bloods again tomorrow and my body has been showing signs that it does when my medication isn't enough.
I've never been on once dose for a long period of time it's like my body gets used to it and then demands more of it. I'm getting to the point where it's really starting to get to me now and stressing me out.
Has anybody been in this situation and if so would you mind sharing with me what happened next? A friend who had overactive had part of her thyroid removed and now she is underactive and she said they might remove my thyroid which I don't really want.
Sorry for the long post.
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justjade90
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For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Lactose intolerance can be reason for needing higher dose than average
They are what I have taken every time. I've been tested for celiac, Crohn's and for being lactose intolerant and all are clear I've had camera's down my throat the lot. I've seen dieticians because I have diabetes type 2 so my diet is basically restricted and what I eat is everything on the ok list. My bloods are always done early and 24hours after I last took my meds. I also don't take any other medication when I take my levo so all my test that come back are accurate and even when repeated due to doubts I get the same levels.
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
I've tried gluten free it didn't make a blind but of difference. I don't really have any dairy as it is and when I went vegan for a while there was no difference except I was so damn hungry lol. I replied further down to a member with what my latest bloods said but I can't find my T3 result but I know they took them as I spoke with my consultant about it.
I doubt a clinician would ever suggest that someone with Hashimoto's should have their thyroid removed - the autoimmune condition is destroying your thyroid without any help needed from a surgeon - but even if that were to be the case, you'd simply decline their offer of surgery. Beware of well-meaning friends offering advice whose situation with hyperthyroidism is very different from yours 😉. It isn't the case that we get used to a dose and then need more of it, in the way that street drug users do in order to get the same high; but if we aren't yet optimally medicated with each successive dose increase we can find symptoms initially abate but then return; and there can be a number of reasons why you remain symptomatic on your existing dose or your hormone levels remain low. So as has been suggested, post the results of your upcoming blood tests and folks can then comment more specifically on what might be going on.
Yes this was my life for 10yrs. When I was first diagnosed and put on 50mcg I thought it was fecking fabulous! Then a few months later I felt Hypo again, so dose was upped. I can see things clearly now that I’m optimally treated. I can look back over my condition with hindsight and assess how I was. There were times on Levo when I felt well it just never seemed to hold for long and certainly not what my GP had promised (although I’m exaggerating with that comment, my GP never promised anything, they said exactly jack shit about it except, you have an underactive thyroid, take this pill for life and you’ll not notice it). Looking back I can honestly say that even when I felt well I was never really well.
But when really Hypo and increase in Levo can bring relief. I used to wonder the same as you, Will I hit a wall? How much Levo can one take? Is it an infinite amount? Is there an equivalent synthetic dose to a normal functioning thyroid? I didn’t even know that there was a guideline of weight to Levo ratio. I’d surpassed that anyway so that didn’t give me peace of mind. I ended my Levo only journey on 175mcg. I had hassled and bullied my GP for about 8yrs. Well not always her, I tried to get appointments with anyone because I thought that little of her. I didn’t know what was wrong with me but she sure as shit didn’t know either. I remember once refusing to leave an appointment with a fresh out of college locum, poor kid didn’t know what to do with me. I said I wouldn’t leave without a prescription for an increase. He ofcourse said my results were in the normal range and so he couldn’t, I said they’re not normal for me, they’re too broad. In the end he promised he would bring up my case at lunchtime when they had a meeting with the senior members of staff. Later in the afternoon I got a call to say my prescription was waiting for me. Yay! I win. But not really, all the GPs hate me, they tried everything to get me to move on to another surgery. I refused, I figured they’d all be the same, I had tried every personality in the book, sweet, stupid, tearful, obnoxious. It didn’t matter how I approached my condition they all had the same stance, YOU ARE IN RANGE, GO AWAY! THERE IS NOTHING WRONG WITH YOU!
Although I knew what they were saying was wrong, I wasn’t getting anymore knowledgable either and doubting myself all the time. I only have a diploma in childcare, equal to 3 A levels. I looked after children all my life, I’m not educated enough to disagree with GP’s who are quite clearly middle class and have degrees, not just any degrees, medical degrees! I only managed a C in biology. I really considered myself quite thick, stubborn and thick! Is it gaslighting? When someone makes you think it’s you that’s in the wrong?
Anyway, I now also realise with hindsight that mental health is a big part of Hypo, self loathing and doubt, anxiety ect
So around 2014, I’d been diagnosed about 5yrs and I demanded T3 tests. No idea what I’d do with the results and actually they came out in range but only just, 3.5 (3.5-6.5) so my GP said, there now that should reassure you, now go away. But that was the beginning of a good history for me, I had 4/5 full thyriod results. I found TUK (why had I not seen it before??) TUK has an article on DIO2 testing, so after I got those test results I burst out crying, is this it?? Is this the reason why I keep having to increase my Levo? The test confirmed that I may not convert well.
Phew sorry, I’ll cut it short now, I’ve rattled on a bit. I posted my history of results and most members here agreed that it looked like I was a crappy converter and to go for T3.
I’ve been on it over 3mths now. Reduction in Levo and added T3. NOW I realise how unwell I was. NOW I realise that I should have started my curiosity and education earlier but I was raised that DR’s know best, well actually not quite, I was raised to think that I wasn’t very smart.
I feel quite perfect now. Im still a stone or more overweight but 🤷♀️ so what, I’m soooo mentally happy, I just take it in my stride 🤗
Your post really resonated with me, I hope my story helps, if not 😬 soz 😉😂
I got my diagnosis 8 years ago and I've tried all sorts now. I've lost weight I've tried every kind of diet even tried vegan but I was just miserable eating awful food. I have an allergy to seafood and also can't eat fruit as they make me sick so I've done the best I can diet wise.
I'm not sure what flares my hashi's up as there is no pattern to it. Which is why I'm so done with this crap. My latest tests which resulted in my meds going up to 200mcg were
TSH 11.3
T4 12
I can't find my T3 results but I know they were taken as my consultant told me the result I just can't remember off the top of my head what the result was.
I'm just so sick of having this stupid condition and feel like it starting to ruin my life. I know everyone says well if you change this or change that you will feel better but I've tried and it didn't work it just made me miserable.
So you haven't had bloods retested since dose was increased to 200mcg?
Next step is to get FULL Thyroid and vitamin testing
Ask GP to test TSH, FT3 and FT4 plus vitamin D, folate, ferritin and B12
If GP can't or won't....then like thousands of us on here, you will need full testing privately
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
come back with new post once you get results and ranges
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
(But some people need higher dose and/or addition of small dose of T3)
How much would private tests be as I have to battle with my dr's just to get them to do the T4 & T3 as they insisted that just a TSH was enough. When I know that it isn't.
Justjade90 That’s a really crappy T4 result while on such a high dose. Forgive me for asking because I don’t know you but you definitely use all the correct protocols for taking Levo?
If so even though I haven’t seen your T3 results it seems apparent that T4 is not working for you. You need to look at adding T3 or even going T3 only, one of those two will work but Levo alone just doesn’t seem to be right for you.
Yeah i don't eat or drink on a morning so I take my meds with water then by the time I e dropped the kids off and got to work I don't have time to eat anyway. I don't take any other medication with it either I was given advice on here ages ago about how to take them and that's what I've done ever since. I wouldn't know how to go about adding T3 my doctor's won't prescribe anything else.
Thanks for clarifying and sorry for asking 😬 to get T3 you’d need to start building up a history of full results. Do you also know that your vitamin and mineral levels are good too? Take the next few months to get these results. Probably you’ll have to do these privately, every 6wks. Then either ask forum members to PM you their private Endos who aren’t adverse to prescribing T3 and also TUK have a list of Endos but I’m not sure how good it is, might be hit or miss. Or self medicate, buying your own T3 and hopefully forum members will private message you with their suppliers.
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