Good evening all! I was diagnosed with Hypothyroidism around 4 years ago. Starting TSH was 16. Prescribed Levythyroxine. At that time I was unaware of other numbers or any information. At the start I had a lovely couple of weeks of feeling what I hoped was my new normal, since then it's been like pre-diagnosis and I've been no better off.
Regular GP basically shrugs his shoulders and says everything within normal range every time I visit and they can't offer me anything other than levythyroxine through NHS. Over the years I've gone from 50mcg dose to 150mcg and have been on 100mcg for the last couple of years.
Last time my levels were TSH 3.7, FT4 13.9 and FT3 3.8. GP decided not to change dosage. I chose to see a different GP this time round TSH now 5.7, FT4 16 and FT3 wasn't tested as apparently too soon since last test 6 months ago? So will take it as 3.8. (currently waiting for online access to get my test results in full)
GP#2 has upped my levythryoxine from 100 to 125mcg, I get revised blood tests in 8 weeks. Still trying to get my head round what all the numbers mean.
Am I correct in my understanding that as per the book Stop the Thyroid Madness:
"A free T3 toward the top part of the range and a free T4 around mid-rage"
that if the ranges for women are
Free T3 = 3.5 - 7.8 then at 3.8 I would be on the low side
Free T4 = 9.0 - 25.00 at 16 would be around mid range and ok?
TSH = 0.4 - 4.0 at 5.7 would be high
From what I understand these would be the optimum levels if NDT or T3 were being taken so I don't really know what I should be looking for on T4 only, or whether my numbers show that I should have T3 or NDT (not that they will be prescribed!).
I will persevere in the next few weeks with the prescribed increased dose, in the hope it does something for me. If not I really need to review my limited options since they don't offer T3 or NDT in the UK and the likelyhood of being referred to a consultant is remote, but I don't really know what they would be!
Apologies for the ramble, considering I used to be an analyst, I'm finding this all a minefield to get my head round!
Thanks for listening!
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NotRocketScience
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Your increase is required as you rightly say you are under medicated. Have you had vitamins tested? Folate, Ferritin , B12 and vit D? We are often low in them and getting them optimum could make you feel a lot better.
Each of us has a different optimum spot so “ normal “ the usual GP interpretation means in range and is not helpful to anyone. On T4 the aim would be to get TSH very close to 1 or below and FT4 and FT3 in the upper part of the range.
Suggest you look at Thyroid UK website for more information.
Oh you poor thing! All these years it sounds like youve been a victim of prescribing by the TSH nonsense. This has proven to lead to under treatment.
My understanding is that both T4 & T3 should be in the upper third of the range, the TSH under 1. The precise position of these figures depends on what works best for the individual which is why signs and synptoms should also be noted. My endocrinologist told me that so long as your actual thyroid hormones (ft4 & ft3) stay within range you are unlikely to cause harm. It does not matter if the TSH is suppressed so long as the thyroid hormones are in range.
Unfortunately GPs have a simplistic and literal view of treating Hypothyroidism and think if your TSH is in range you are fine. This is why you have had the nonsense of your levothyroxine being moved up and down like a yo-yo irrespective of how you feel! Nonsense.
It is important that as meme said that poor level of vitamins are corrected as that can affect you too. I found B12 when low really affected my uptake and once corrected my temperature moved up .6 of a degree!! And I felt so much better even though my thyroid med dose was the same.
Am afraid you are likely to have to be an advocate for your own well being as leaving it to your GP isnt working. So being on here will help and also if you havent read Barry-Durrants book calked Living with your Thyroid will also arm you well with knowledge. Knowledge is power.
I'm not an expert but it looks like you're undermedicated even looking at your TSH alone. Go with the increased dose as prescribed and see how you feel in 2-3 months time. I only started taking T3 when my TSH was at the lower side of the range with FT4 mid-range and FT3 at lower side and doctors would not increase levothyroxine any more.
TSH is thyroid stimulating hormone. Its a chemical messenger made by the pituitary to signal the thyroid to make more hormone. When thyroid hormone is low it will rise. In a person with a healthy thyroid it would be about 0.8-2, once it rises to about 2.5 we can be pretty sure there isn't a healthy thyroid. Once we're on hormone replacement most people will need a TSH lower than in the healthy population to feel well, because our tablets are very good at pushing TSH down. This means levels of 1 or below. Yours have always been elevated, which tells us you've been undermedicated a long time.
FreeT4 tells us how much available T4 is in our blood. Levothyroxine contains only T4, so freeT4 is a bit more important for people taking Levo than those on NDT or T3, because it shows how much your tablets are boosting levels. Usually patients taking Levo only will need a pretty high freeT4, close to the top of the range or even slightly above the range to feel well. When not taking any T4, this number doesn't matter too much, because T4 is only a storage hormone. Some people feel they need it at a respectable level to feel well, though. Yours is around mid-range, so you will probably need it quite a bit higher to get better.
FreeT3 shows how much available T3 is in the blood. This is the most important number in the thyroid panel, because T3 is the active hormone and this number will most closely reflect symptoms. T4 taken as tablets or made by your own body has to be converted into T3 before it can be used. This is why freeT4 needs to be quite high on Levo, to make sure your body has plenty to convert. Most people will need this high in range to feel well, in about the top third. Yours is scraping along the bottom and this is why you feel so rubbish.
In a perfect world the next step would be to increase your dose by 25mcg, have another blood test in 6 weeks and adjust again, and so on like that. Keep raising freeT4 by 25mcg until the freeT4 is high in range or symptoms have resolved. Once freeT4 is high it's possible to assess if you are good at converting T4 into T3. Often when we've been ill a long time our bodies aren't as good at it as we need. In that case a small amount of T3 can be added in.
But you may have trouble finding a doctor who will help you
TSH between 0.2 and 0.5 (yours is ridiculously high and needs to be brought down)
Free T4 and freeT3 at the upper third of the range.
Your doctors are keeping you seriously undermedicated when they should be optimising your dose until you feel well again.
Thyroid UK have a Pulse article by Dr Anthony Toft an eminent endocrinologist that states the above and you can get a copy by emailing Dionne:
tukadmin@thyroiduk.org
to show your doctor to educate them in how to optimise your thyroid medication. You can highlight it I think it is question 6 to keep it succinct. Also thyroid UK is recommended by NHS choices if you get any you should not look in the internet nonsense from them.
I hope you get a much needed increase in dose 🍀☘️🍀
Thank you for all your replies. The explanations you have provided have been much easier to process. I think I get where I need to be aiming for now and what to push for with the Dr. I know they will not prescribe T3 or NDT, so I guess I need to get my TSH down as low as possible and see from there where my Free T3 and T4 numbers come within their respective ranges. I had my Follate and B12 tested. B12 was normal and Follate was slightly low. I don't think the GP tested for anything else. I intend to follow up on your various recommendations and print out this information which will also be useful for my mother who has been suffering far longer with Under Active Thyroid. Thanks again!
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