So, another update and a load more questions!sorry in advance for the long-winded post.
Diagnosed at the end of 2018, by March I was steady and gradually felt well on 75mcg levo, together with prescriptions of Vit D, folate, ferritin and B12 injections. I genuinely felt alive through the summer until December when I noticed a gradual decline in energy, lots of palpitations and reduced emotional resilience.
Blood test in December: TSH 2.32 and FT4 13
Levo increase from 75mcg to 87.5mcg.
Blood test yesterday: TSH 0.21 and FT4 15 - and a call from GP to reduce dose back to 75mcg.
Meanwhile my palpitations have stopped, I feel better but not ‘right’. I haven’t had a period since the second week of December, I’m constantly cold but then have a woooomf of heat/hot flush, particularly in the evening (I take my levo in morning). Yes I’m 44 but I feel this is linked to thyroid not perimenopause (at 39 I was wrongly diagnosed as post-menopausal but it turned out to be hypothyroid so I’m going along this reasoning - but could be totally wrong!).
I’m confused (again!)!
I have a GP appointment on 12th and would be grateful for any advice as to what to be asking for. They were happy for me to have TSH of 0.01 with FT4 of 21 (felt so well) and left me unchecked for 6 months so why are we now reducing my dose when we know 75mcg made me hypo?
I’m ordering a medicheck test tomorrow (or whichever one hopefully has an offer on) as I’ve never had T3 or antibodies tested but I don’t think I would have the results before my GP appointment.
What do we think? Am I hypo or meno or hyper or could vitamin levels be causing any of this?
Arghhh! I’d be so interested to hear if anyone else has had similar symptoms with these kind of levels ... thanks muchly!
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Jooju2004
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My most recent blood test was at 11.45am as it was the only time I could get in - so I stayed in bed til 10.30am and fasted til after hoping this would trick my body into thinking it was early morning - do you think this made my results look better or worse?
Good your GP agreed to increase in Levothyroxine dose (on newer post)
Suggest you get FULL Thyroid and vitamin testing privately 6-8 weeks after this latest Levo dose increase
Do you have Hashimoto's? Autoimmune thyroid disease diagnosed by high thyroid antibodies?
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or to regularly retest 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
Yes that’s how I usually do my tests but the last one was nearer lunchtime (still fasting and before I took my levo) so I will make sure I go for an early appointment next time.
Vitamins - not tested but I will follow your advice and get done privately with full thyroid profile in 6 weeks - I have no idea if I am hashi’s but always assumed so, so it will be good to find out and to know what my actual T3 levels are🤷🏼♀️
I had a call from receptionist to say had to reduce Levo. Told her no( I’m under Endo) she was quite shocked. Carry on with dose till gp appointment. I think we need to start buddying up for these GP appointments. They are driving me demented!!!
It’s mad isn’t it - and then we never manage to say what we need to say in the 10mins we have (hence getting the ammo on here first so I go in prepared!).
I did think I may as well stay on same dose at least until the appointment - good call!
Are you hashis? Your GP is going to make you ill - or never give you the opportunity to get well. How dare they reduce your dose via a phone call, without explanation or looking at your symptoms- or checking if you are over-medicated.
I’ve posted the below before a few times so apologies if you’ve read it already, but just in case it helps - I’m on T4, you might find the comments about hashimotos and over-medication useful in your battle to be well.
I see an endo privately which I know isn’t an option for everyone, but he’s very understanding and is a thyroid specialist.
Last time I went to see him my blood results showed my TSH is now plunging into the nether regions, my T4 and T3 are about 50-55% of the way through the range and I still feel like cr*p, though not as cr*p as the cr*ppest I’ve felt. He is happy for me to continue to increase Levo despite the fact that my TSH will go lower and it is already below the reference range.
What he said was interesting - he said most Doctors understand underactive thyroid as that is relatively straightforward, but they don’t understand hashimotos, which is more complex to treat as it is difficult to stabilise your levels. GPs just treat it in the same way as underactive thyroid but it isn’t the same. He said that the TSH does strange things with hashimotos as the pituitary doesn’t know WTF is happening as the thyroxine from the thyroid waxes and wanes. So basically the pituitary loses the plot and TSH tends to go low.
My endo also acknowledged what I have always thought that despite doctors saying synthetic thyroxine is just the same as our own, it isn’t and many struggle to convert it. This means the TSH responds to the level of T4 and goes low, but we actually struggle to manufacture T3, so need to take more of the synthetic T4 stuff than we would have to produce of our own - even more than the normal range for T4 for some people to be able to make/convert into adequate active energy and therefore to feel well. This is the reason the T4 and T3 test are so important.
The combination of hashimotos and synthetic T4 creates a perfect storm. Your pituitary goes AWOL and you may struggle to do anything with synthetic T4. Therefore other than T3, patients should not be assumed to be well just because they fall within the ranges and a low TSH is fine if there are no signs of being over medicated e.g. high FT3, heart racing, tremor etc.
There are physical tests your doctor can do to check if you are over-medicated - pulse rate, check the heart rhythm, extend your arms and see if there is tremor in the hands etc. You can take your temperature and heart rate on waking every morning and record these to show your doctor as proof too. Despite my TSH being low, on waking my temp is usually 35.2 and my heart rate 56! For your doctor - testing your bloody T3 and taking note of a T4 result that is nowhere close to the top of any reference range I’m aware of would be a bloody good start!
He should be investigating why you are not symptom free and feeling better despite the stupid TSH reading. Not responding to a piece of paper rather than a patient.
Do battle - and good luck. Tell your doctor to dose the patient not the blood test. If you were over-medicated, believe me, you would know. When I was over-medicated it was scary, heart racing and pounding if I just stood up, feeling nauseous etc- you would want to reduce if that was the case! 🤸🏿♀️ #fightforyourthyroid
OMG Miss Grace thank you so much for your comments - I’m memorising most of it to spout at my GP! I’ve dug out my fitbit off the back of what you’ve said and my resting heart rate overnight was 51 and through the day it doesn’t get over 61 (unless I’m briefly energetic (😂)or having a hot flush when it goes to about 77 for a minute), I don’t have a thermometer but think I should invest in one to be able to check waking temp.
I want my T4 back to the top of the range (21ish) but not sure how I make GP agree when my TSH is so close to the bottom of the range. I will go armed with your comments, copies of NHS guidelines, Dr Toft article, and perhaps some boxing gloves!
The stuff about the pituitary gland being confused makes sense too - especially with the hot flushes. Do you think it doesn’t know what to do so doesn’t even bother telling me to produce estrogen too?
Thank you loads again ... it’s so good to hear some wise common sense! x
Unfortunately your experience is all too common The doctor is making a completely knee jerk reaction to the TSH and not caring about anything else.
You haven't given the ranges, but I assume your new TSH result is just below the range. Your freeT4 on the other hand is not very high, its probably below the middle of the range assuming its snout 12-22.
I imagine you were left alone with the surpressed TSH in the past because either a more pragmatic doctor looked at it, or no one was bothering.
Its good information for you to know that you felt better on that higher dose. The hard part is getting doctors to agree to it
All you can do is try to argue the guidelines. I'm not very good on that kind of thing. You could look up the Dr Toft article Counterblast. Print it and highlight the relevant bits. He has lots of credentials doctors should respect, so look them up too and write them prominantly on the print out.
There are NICE guidelines, too. Which I believe do say blood tests are just a guideline, and symptoms are more important.
The other option is to go rogue, stop making appointments to have blood tests, hoard or buy a bit more a Levothyroxine and take the dose that relieves your symptoms. Before the stupid blood tests were invented we were dosed purely on symptoms.
Thank you so much for your reply! Sorry - I don’t have the ranges as I got the levels over the phone and didn’t think, all I remember is that top of T4 range is 21.
All I can do is throw everything you’ve said, along with the others on here, at my GP and hope he is open to it.
I called the surgery back today to ask which GP had made the decision to lower my dose - the receptionist gave a name I haven’t heard (presume locum🤔) so I politely said I will be ignoring the advice until I’ve seen my regular GP.
My only niggle is these blooming hot flushes - spend my days feeling cold/not hot and then several times a day it’s like my thermostat switches on in boost mode - I bet the GP will use these as proof I’m over medicated x
Don’t mention them then... the flushes could be connected to the hashis or could be peri-menopause - it’s hard to separate the two. And if you think they are not an issue, I’d avoid discussing them. I’m hashis and I have flushes sometimes. But I had menopausal flushes and they don’t seem any different to me. I can put up with flushes if I feel well. 🤸🏿♀️
They’re such a new thing for me (last few weeks) and I really don’t like them as I assume they’re telling me something (probably just that my periods have gone awol lol).
I’m cautious because my hypothyroidism was misdiagnosed as ‘post menopausal’ when I was 41 (44 now) so I know the thyroid affects my sex hormones but I don’t want to assume everything is my thyroid forever more. It’s all so ruddy confusing😩
It’s a mare. But trying to be as symptom-free as possible has to be the chief aim.
My GP would have left me ill too. I wasn’t even in the normal ranges - but my GP said, you’re okay now, your TSH is coming down. It was still 8 (though it had been 60, so I suppose he saw that as a result following his marvellous diagnosis and treatment!) When he said it, I still felt as bad as I ever had. I looked and felt like cr*p. I couldn’t even find the energy to brush my hair, let alone do the ironing! I sat there like a washed out tramp and he said that was okay! He refused to refer to me to an NHS endo (he only refers for hyper, not hypo - after all, he knows how to successfully treat hypo doesn’t he? There was I - a shining example of his treatment - looking like a bag lady!)
That was when I knew the only way I was going to get well was to find deep pockets. I know not everyone on here is in a position to do that and it makes me sad. 🤸🏿♀️
With a freeT4 of 15 when the top of the range is 21 there's no way you're overmedicated! Most people need a suppressed TSH (well under range) to feel well on Levothyroxine, and often freeT4 at the top of the range.
Some people feel cold all the time when they're hypo, others including me feel more like we just can't regulate temperature. I'm constantly putting on and taking off cardigans!
Doctors dosing on TSH is just awful! Even worse if it's fine by a junior inexperienced staff member in an office alone without even speaking to you! I think you did well to demand seeing your own GP. It's definitely worth trying everyone in the practice to see if you can find one good one, and loudly tell them you felt better with a higher freeT4 in the past. It's good to have that knowledge you can try to persuade them with!
Thank you! I’ll keep you posted! I guess my main difficulty will be arguing that I need a TSH of less than the 0.2 it is currently.
I’ve been googling so much in order to have the ammo for GP that I’m tying myself up in knots... my latest discovery was an article on Pub Med saying that weight loss of just 5% can cause reduced T3 even though TSH is low. I’ve lost 12% (so slowly with reduced calorie diet) so maybe that’s a factor too🤔
I’ll throw everything I can think of at GP so if nothing else he thinks I’m a neurotic hypochondriac!
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- do you think this made my results look better or worse? 
The doctor is making a completely knee jerk reaction to the TSH and not caring about anything else. 
My latest blood results
This is my blood test result after Levo was reduced a few weeks ago. Does it look ok?
GP looking to reduce Levo
Latest bloods- GP thinks I may be overmedicated
