I know someone will be able to clarify things for me. I have 1/8th of thyroid remaining after having rest removed 30 years ago. My GP keeps telling me my bloods are 'normal' which is an insult in itself, only interested in TSH and T4 and I think that's all they ever test for. If I do not have a full thyroid gland why do they only look at this result? I think it's the pituitary gland telling the thyroid to release thyroid hormones ( is this correct? maybe total rubbish) ? If there's only 1/8th of gland available surely the TSH result would be rubbish anyway? Would it not be low naturally?
I have found out I have had glandular fever 8 weeks ago and now have abnormal urea and creatinine in my blood. Sorry, I've gone off the point. I have GP appt next Tuesday and just know they will blame all my hypo symptoms on the glandular fever. I am taking 100mg Levo every other day and 75mg days in between, a couple years ago I was taking 175mg a day so as you can see this is a big drop. Any help or advice would be much appreciated thank you.
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DoeStewart
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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 money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's
Thanks for that info. I may look at private blood tests but doubt my GP would alter their opinion of how to medicate me sufficiently if I presented the results to them. They are so entrenched in the TSH range that nothing else matters.
If you have Hashimoto's then often strictly gluten free diet helps very many patients
Hashimoto's affects the gut and often leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
You're right in your definition of TSH. But, the pituitary doesn't know that your thyroid has been partially removed. It just reacts to low levels of thyroid hormone in the blood - be it exogenous or endogenous hormone. So, if your TSH is high - and by high I mean more than about 1.2 - then it means you need an increase in dose.
However, the converse is not true. Just because your TSH is low, doesn't mean you're over-medicated. But, unfortunately, doctors think it does, which is why they tend to go just by the TSH. You have to realise that doctors are very badly educated in thyroid, all over the world. They don't understand T3 and what it does; they don't know about poor conversion; they can't understand FT3 results. So, they rarely test it. Ideally, they would dose by the FT3, but with their level of education, they couldn't even if they wanted to.
The FT4 is the next best thing - although far from perfect - and you cannot be over-medicated if the FT4 is still in-range. However, just because you have a good level of FT4 doesn't mean you also have a good level of FT3. Therefore, people tend to get private labs so that they know just where they are.
I don't know what you can do about your doctor's ignorance, apart from self-treat, which so very many of us do.
Thank you for reply. Do you mean by self medicate that people take more of their Levo than the GP recommends? Wouldn't you run out before your next script is due? I had been thinking of upping each days dose by 25mg so would take 125mg for 4 days and a 100mg for 3 but wouldn't have enough to last my 2 months that the medication is for?
By self-medicating I mean buying your own thyroid hormone - whichever one you prefer - and taking as much as you need, rather than what your doctor thinks you ought to need. GP's dosage recommendations don't really count for much as they know nothing about thyroid. It's your body, you know what you need.
Do you have any blood test results, so that we can get a better idea of what you might need to take?
Thank you for that infomation. I am going to send off for private blood tests after Easter break and once results known I will post. What do I need to have tested please?
But, if that's too expensive, you could get by with just TSH, FT4 and FT3 for the time being, and do the rest at a later date. I see SlowDragon has given you a link to private testing.
Thanks greygoose, I will have that done after the Easter break. I will get all mentioned tested so to get a full picture. I ended up in hospital yesterday as I had presented at Dr surgery feeling very unwell and was sent straight away. After a barage of tests they queried how long it was since I'd seen an endocrinologist- I'd told him 30 years. He is writing to my GP to tell them to refer me to Endo, he was of the opinion that us thyroid patients should be seen regularly. I am not expecting miracles from the Endo but would be nice to be armed with information so I can at least sound like I know something about my own thyroid. If I don't get answers from Endo then I will be back on here for information so I can self medicate as so many others seem to do.
It's often the best solution. Bless the heart of that emergency doctor! Sending patients to endos does sound like the right idea, but he's really not au fait with the facts, is he! Endos often know less than GPs! Sad, sad system.
It's a sad sorry state of affairs isn't it when people have to sort their own full blood tests and self medicate to achieve better health. I don't think this happens with any other medical condition. Even whilst I was at the hospital, just before I was discharged I was told they would request one of my blood samples to be tested for my thyroid levels. I queried what they tested. You can guess the answer TSH and T4. I queried why no other tests, what about T3. The lovely young lady Doctor who was doing my discharge said sorry, I don't know anything about the thyroid but I will add it to the form, the Lab might not do it though. I said so if you request it then it's up to the lab what they do? She said if THS and T4 in range they don't do anything else, that's all that's needed. No wonder we don't get anywhere !!!.
No, don't give up hope. It's taken me years and years to find out what I need to take, understand my body and do what's right for it. I'm sure you'll get there in the end - despite doctors!
Very often the only way to go is self-medicating. I think I can safely say that every single doctor I've ever seen has made me worse in some way, rather than better. So, I'd rather not see anymore!
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