Following my recent blood tests healthunlocked.com/thyroidu... I have finally managed to speak to my doctor... She was on the fence about reducing my levo but as I still have hypo symptoms we agreed to stay at 100mcg levo. She didn't care about my fT3, said my fT4 was likely to change naturally over time but that the TSH gave her lots of information (I know there are tonnes of posts here which say something close to the opposite...).
I asked about vitamins, nutrition and supplementing and she said that any benefit would likely be marginal, but that focussing on it would probably get 'too much in my head' and cause additional stress. She also said that Levo, for those that don't instantly feel better on it, can leave some of us feeling crap for an unspecified long amount of time, because it is not the exact thyroxine my body would naturally make but an approximation of it, and it can take a long time to get used to it. She did not seem at all concerned about the possibility of there being something else causing me to feel undermedicated (hypo) when my bloods suggest I am slightly overmedicated.
She said I'm at risk of chronic fatigue unless I ignore how tired I am and make myself go for daily (or more) walks. I have felt like she at least listens to my questions and complaints and takes them on board (unlike the last GP) and I know she's a medical professional but...
Should I take this at face value? Is there little I can do about feeling crap? How much difference do dietary changes make? I am already gluten free, soy free, minimal dairy... I'm concerned these diet changes might be leaving me deficient in unknown areas, so I'm still inclined to try to see a dietician (however much in my head I get). I've learned a lot of patience this year but I can't sit around for the next three months, until my next blood test, doing nothing but hoping not to feel so shit (pardon my language).
Thanks in advance, and sorry for the rant x
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malohant
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Looking at previous posts including vitamins.....all look pretty good
Suggest you sit tight at current dose and retest again in 2-3 months including vitamins
Make sure to do blood test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
If taking any supplements that contain biotin stop these a week before ALL BLOOD tests
I don't think she has the slightest idea what she's talking about. Sounds to me as if she's making it up as she goes along.
I asked about vitamins, nutrition and supplementing and she said that any benefit would likely be marginal, but that focussing on it would probably get 'too much in my head' and cause additional stress.
I think that what she's actually saying her is: I don't know anything about nutrition so please don't ask me questions on it.
If you are deficient in anything, optimising that nutrient can make a huge difference to the way you feel. Low nutrients cause symptoms, just like low hormones. Besides, they all need to be optimal for your body to be able to process thyroid hormone correctly.
She also said that Levo, for those that don't instantly feel better on it, can leave some of us feeling crap for an unspecified long amount of time, because it is not the exact thyroxine my body would naturally make but an approximation of it
Not true. It is an exact copy.
She did not seem at all concerned about the possibility of there being something else causing me to feel undermedicated (hypo) when my bloods suggest I am slightly overmedicated.
Doubtful she would even know about anything like that - Resistance to Thyroid Hormones, for example, where not enough hormone gets into the cells where it needs to go.
She said I'm at risk of chronic fatigue unless I ignore how tired I am and make myself go for daily (or more) walks.
I have never heard the like! I'm speechless. Good get-out, though.
As for her ideas about the TSH... Pity you didn't ask her exactly what information it give her. I can only see two things it could possibly tell her without taking other results into consideration.
a) you're under-medicated
and
b)...
Well, let's say one thing. I would be really curious to know what else she sees in her TSH crystal ball.
Oh, as to the dietician, they tend to have weird ideas, too. You'd be far better off geting your vit D, vit B12, folate and ferritin tested, and coming back here with the ranges and the results for more advice.
Thank you, I saw that post! And yes I've read others' posts about the difference a diet change can make. The problem is my GP says her piece with an authority I find difficult to question, but it definitely didn't sound entirely right (according to what I've learnt here). Thanks for all your advice!
So she bullshits with authority. Best thing to do is to get out a notebook and ask for journal references to back up what she says, or just not bother to discuss it.
H i there , Some of the thing's she has said ring loud alarm bells to me ! Alarm that she doesn't know what she 's talking about on the subject of thyroid hpormone replacement , or Chronic fatigue type symptoms.
1) for example 'FT4 is likely to change naturally over time' ? It might , and you should listen to it if it does , not ignore it . Does she actually understand how /why FT4 may change i wonder ? or is this statement just 'fluff' to cover lack of understanding.
2) ' Levo is not the 'exact' thyroxine your body makes , It can take a long time to get used to it'... ? How Long ? It didn't work very well for me to start with ...... its 17 yrs later now ...... is that long enough?
3) If you were to be one of these people who didn't 'instantly feel better' on it, surely even a 'marginal improvement' from nutrition would be important , and you should at least be given positive feedback about your interest in doing the best for your health. I presume you have been on it a while to be up to 100mcg's in which case you are not some newbie who expects to feel better in a few days/weeks.
4) 'Make yourself go for walks'. Mmm, well keeping moving at a sustainable level is one thing and yes, probably good advice. But there has been a now discredited idea about treating Chronic Fatigue Syndrome with something called GET (Graded Exercise Therapy) based on pushing yourself past sustainable levels, which has been shown to be harmful in CFS/ME.
I have been through the 'treatment ' for CFS/ME when Levo alone did not make me well again after a few yrs on it. The experience was in the main damaging . physically and psychologically.
5) 'You are at risk of chronic fatigue if you don't push yourself'...... In my experience chronic fatigue is absolutely NOT the result of being inactive , It is the other way around. It happens to an active person and makes them become inactive. Forcing people to maintain previous levels of activity when they cant without becoming exhausted for days after, does NOT reverse the process. I can save you the trouble of experimenting for yourself. I experimented on myself , i was used to doing a very physical job , an hour of martial arts practice a day , and an hour of circuit training 2x aweek, and didn't just decide to sit on the sofa one day and stay there. But this didn't stop me becoming chronically fatigued.
6) Out of interest, you say your bloods show you are slightly overmedicated, Is this based on TSH result alone or does your FT4 also indicate the same ?
Sorry for my 'rant' too , but i don't like seeing people being sent down the same wrong path i was sent on for 15 yrs.It can lead to loosing yourself, in a much bigger way than she's worried about you getting 'lost' by looking at your vitamin levels.
Thank you tattybogle , yes your last point is exactly how I feel - trying to improve my health feels like taking some small amount of agency over my situation, whereas not doing so feels like encouraging apathy and fatalism.
Yes I have been taking levo since Feb, been on 100mcg since May. Had a couple of brand changes thrown at me but been on Northstar Actavis/Accord (and sticking to it) since late July now. I know I won't feel better anytime soon but I'm not ready to give up trying yet - I also have an active job, working in a restaurant (which I have been trying to improve upon for years, with no success) but am currently off work sick as being on my feet for half an hour (eg doing the washing up or cooking) at the moment leaves me exhausted.
Thank you for sharing your experience with 'GET' - that definitely feels like what GP (and prev GP) are pushing me towards. If I have energy for a walk it does feel helpful but if I don't then it would make me more exhausted, which definitely doesn't feel helpful.
My last blood tests (see link in OP) came back with suppressed TSH (0.02) and elevated T4 (23.something). They are also likely falsely low as I took my last levo dose 34 hours before the test.
A friend of mine died because she was ordered to do GET and believed her doctor when he told her to ignore the pain. She twisted a gut during the "exercise" and tried to ignore the pain and died.
I really think you need a more knowledgeable and less sadistic GP, but a lt least she didn't reduce levo. All that sounds like something my elderly neighbour would say her granny told her at the turn of the last century - not scientific or accurate at all. Optimal vitamins do make a difference and the most important result is FT3, and AFAIK, thyroxine is the same as the thyroxine your body makes - you just aren't getting the T3 that your thyroid ought to make. Not everyone needs exactly the same level as everyone seems to have their own sweet spot, however for most people both FT4 and FT3 need to be at least 50% of range
Thank you AotN. I know what you mean, it didn't sound right (which was why I posted here) and against a lot of what I've learned here. It's conflicting because she seemed to be a damn sight better than my previous GP, she seems sympathetic, she listens to my concerns and tries to help instead of dismissing me outright. Or at least she did.
My ft3 came back at 76% through the range (although is likely higher as I understand it) so I'm not sure that's exactly the problem. Although I definitely haven't found my 'sweet spot' yet!
Have you had a test for Epstein Barr? There is some research into the links between thyroid and this even if you’ve had it in the past which can continue to cause ongoing problems. Avoid gluten, eggs, dairy and pork and adopt a more whole food plant based diet with some meat and fish if you eat it but just once a day to give your blood time to re-oxygenate. Try drinking celery juice first thing in a morning obviously after meds (at heart an hour I find is best, increase organic veg salad and fruit and try drinking lots of water plus ginger and lemon teas (fresh if you can) take care
I haven't... God i hope its not that, I'm already gluten free and minimal dairy... Eggs are the one thing that keeps me feeling like I'm still eating healthily enough. Can't stand celery. I do eat a lot more fruit than i used to, have been eating lots of organic veg for some time, I do drink more water than I used to but often still not drinking enough. Thank you Sewit1, I'll try to ask for that next time I speak to the doc.
Don't panic but its worth a test, I found out I had it in the past so ask for a printout as it tells you if it is active now or also if you have had it in the past. I'm reading Thyroid Healing, the truth behind Hashimotos, Graves etc by Anthony William, I'm not sure if his theory is correct but can only say I've felt amazing since I've followed his eating plans and reduced my meds from 200mcg (I felt shocking) to 75 mcg and maintained this for the last 8 months. Racing heart, thoughts etc/anxiety type symptoms, inflammation all gone., I have enough energy to walk 4 miles morning and night, I've lost a stone in weight, no more dry eyes or sore joints...worth a try.
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Spoke to a different GP
Feel like doctors won't help me
Please help! So sick of doctors! 
Looking for a private doctor in London
