I still have hypo symptoms and often don't have the energy to do much at all. I felt warm enough in the recent heatwave but I'm now back in my fleece and woolly socks!
Thanks. It makes perfect sense but my GP wouldn’t agree I don’t think. I’m hoping I can get some tips to convert better such a vitamins etc as I’m not financially able to access private health care at the moment ☹️ the blood test was a big expenditure x
Perhaps you could say to your GP, if you are refusing to increase my Levo because of the TSH, even though T4 and T3 are low in range and I am still symptomatic, what are you going to do to relieve the symptoms so I return to good health and function? The obvious answer is a referral to an NHS endo for a possible trial of T3 of course. Don’t fancy your chances, but I’d certainly give it a try. Do get your Vit D up to a good level - I know that has really helped me. I use the Better You Vit D spray. 🤸🏿♀️🥛
Hey 👋, going private could be a last resort. You could push for a referral from your GP. I'm pretty sure you can then choose which endo you go and see. You can get a list of endos from Thyroid UK or recommendations from here for ones that specialise in thyroid and will treat with T3. It takes a bit longer than going private but in the meantime you can try and get your vitamins up. x
Yes I had been thinking along those lines - asking doc to treat my fatigue, hair loss, insomnia, cold intolerance, constipation etc etc - much more effort and expense than reading up (everywhere you look!) on optimum treatment. I too take Better Me Vit D and B12 oral spray plus B complex to balance out. Selenium and Biotin. I have a healthy Thyroid friendly diet so can’t see what more I can do to help myself - except find a good private endo (there are none recommended in my area)
Thanks for this but I did this a couple of years ago and the outcome was that the local hospital endo’s expertise was diabetes and meagre in thyroid and that I would have to travel out of county. I was in fact making plans to go to an endo in Cambridge who I researched when C19 struck!
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, over-medication and why TSH is not a useful measurement for some people. It may help 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 if they try to reduce your Levo based on TSH. Despite my TSH being low, on waking my temp is usually 35.2 and my heart rate 52!
Looking at your results, and I’m assuming you are only on Levo, not T3, you could do with an increase as you don’t convert it to T3 at all efficiently. Alternatively, you could add T3 to your Levo, if you want to - you probably won’t be able to get that on the NHS though. That’s only my opinion. I’m no doctor and I’m sure others on the site more learned than me will be along to advise. I do find the people on here better informed than a lot of GPs though!
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! 🤸🏿♀️🥛
Thanks to all that have replied and you have confirmed my thoughts. However, you may be interested to learn that my bloods were carried out by Medichecks and their doctor is telling me I should go to my doctor as I need my Thyroxine reduced! Very disappointed that Medichecks (who must take many £££ off hypothyroid sufferers ) cant appoint a doctor who knows how it all works - or doesn’t more to the point!
The Medichecks Doctor is just giving the standard response using ranges. Like most GPs - no thyroid specialist and little understanding of the complexities of this condition. It takes no account of you as an individual or your symptoms. I have done tests through Medichecks too and had the same standard bullsh*t response. I think my endo knows better. Just ignore it. Better still, remember to tick (or untick - can’t recall which) the box saying you don’t want any waste of time doctor’s comments. 🤸🏿♀️🥛
I was asked by Medichecks to take part in an advertising campaign...I refused for EXACTLY this reason...Dr “advice” is so often wrong.
Obviously if your confident in your own case you can choose to ignore it (or tick the box for no Doctor comment) ...but there must be many 100’s of thyroid patients being mislead
On hormone replacement therapy TSH is frequently irrelevant
Just to add - I had the same advice from the Medichecks doctor too when my TSH came back suppressed - despite under range FT4 and mid range FT3 - with all the usual warnings about bone wastage etc. based purely on the TSH......
Its just ridiculous! Medichecks does very well out of us and they recruit a Thyroid ignorant medic to give us medical advice? I am writing to them to complain and will go elsewhere .
You are not over-medicated if you have a suppressed TSH; you are only over-medicated if your free T3 goes over-range. Yours is a long way off - in fact if these were my results I'd want a dose increase - your free T4 is 57% through range and free T3 is 51% through range - so balanced but not in the top third or top quartile of the range, which is often what we hypos need ...
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
What vitamin supplements are you currently taking?
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Can see you tested negative for thyroid antibodies
20% of Hashimoto's patients never have raised antibodies
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose 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)
If/when also on T3 or NDT make sure to take last half or third of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.